Help a disabled artist, writer & activist access her home and community while beating a genetic mutation that causes cancer.
Karrie is an award-winning writer, Intermedia artist, fabric designer, ink-maker, and outspoken disability activist in need of a wheelchair van, home mods, physical therapy, medical imaging due to Chiari-Syringomyelia & EDS, as well as preventive surgeries such as a hysterectomy & screenings due to a genetic mutation in MSH6 called Lynch Syndrome or DNA Mismatch Repair Deficiency or HNPCC that puts them at extremely high risk of various cancers, especially colon, uterine, ovarian, stomach, esophageal, bladder, pancreatic, brain, skin, and liver.
A little about Karrie: At age fourteen, Karrie became a healthcare activist, volunteering as a peer educator for a local reproductive health clinic. They organized against wars and for disability rights.
With notables in Best American Essays, Intermedia art exhibited in a retrospective at the first program of its kind, the Schiff Award for Prose, and an essay recognized as one of the Most Transformative Essays of 2016 by Sundress Publications (also nominated for a Pushcart), Karrie’s work breaks barriers for disabled writers and artists. In 2021, Karrie received an NEA-Iowa Arts Council grant for The Log Project, which uses logs from felled trees after the Derecho disaster in August 2020 to create a codex to tell the story of the storm. (www.thelogproject.com)
Donations will fund home modifications for safety and mobility needs due to their Chiari-Syringomyelia, Ehlers Danlos Syndrome and other conditions. Karrie also needs a wheelchair van, medical imaging, testing, medications, financial help remaining insured, etc. They were recently diagnosed with Lynch Syndrome as well, putting them at extremely high risk of familial cancers. Preventive surgeries, extra screenings, and chemopreventive measures will be required.
Help Hope Live verified Karrie’s medical conditions and needs. No funds are dispersed without a receipt or a direct payment to a contractor, etc. You can rest assured all money goes exactly where Karrie says it will. To make a tax-deductible donation to this fundraising campaign, click on the GIVE button. And please consider sharing this link with others so they may donate as well.
Donations to Help Hope Live will help Karrie independently access their literary, artistic & broader local community and ease the financial burden of their medical care.
For Checks:
Make checks payable to: Help Hope Live
Note in memo section: In honor of Karrie Higgins
Please send to: Help Hope Live
2 Radnor Corporate Center
100 Matsonford Road
Suite 100, Radnor, PA 19087
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your Support!
Updates (29)
April 30, 2023
Thank you for all of the support so far! Karrie needs a double mastectomy to prevent breast cancer. Our max out of pocket is extremely high and we need to raise $10,000 (we updated this because we double checked our max out of pocket and it's bigger than last year -- we had been thinking of last year's out of pocket) by July--for surgery and for additional costs related to care after surgery. Cancer mastectomies take a lot of tissue and require Karrie to go without using arms and a lot of rest and PT afterward to ensure no frozen shoulder or other issues. With EDS, healing is delayed and there can often be problems with the scars, etc. If any revisions need to be done, they will likely be in January and subject to a new out of pocket.
January 1, 2023
Happy new year, friends, family, and lovely strangers out there! Thank you for your support through a very difficult 2022! 2023 is shaping up with some new health challenges related to all my conditions, but I feel hopeful knowing my community has continued to lend support. Thank you, thank you! I will post an update soon, after I see oncology, orthopedics, and neurology again! I hope you are keeping warm and safe & I will "see" you soon!
February 4, 2022
Thank you so much for all the support! I wanted to write a quick update. Some of you have seen me posting about this. I recently was found to have the pathogenic gene that runs in my family and has caused numerous cancers. The diagnosis is Lynch Syndrome and it results in an extremely elevated risk of several cancers: colon, brain, endometrial, ovarian, skin, stomach, pancreas, bladder and more. All of these cancers are prevalent in my family history and I have had my own bouts with cancer.
This gene, MSH6, typically is responsible for PROTECTING us from cancer by repairing mistakes in transcription. Unfortunately, with my mutation, it does the opposite and causes cancer. This happens even with good preventive strategies like avoiding red meat, not smoking, etc. It is, as my doctors say, a ticking time bomb.
I will require numerous annual screenings + preventive surgeries + chemopreventive medications + travel for studies (I am currently trying to get into several studies, including a vaccine trial that uses the neoantigens produced by Lynch tumors as a target -- training the immune system too attack these cancers and delay onset + increase positive treatment outcomes since our cancers tend to resist typical treatments).
These surgeries are not covered under my plan (or even most plans) but would reduce my risk of SOME of these cancers by 90%. The screenings will also be a huge financial issue because our deductible is so high and many are not covered as "preventive" medicine.
This is in addition to the already high costs for my disabilities, the disaster damage we are still trying to repair, home mods, and DME (including a wheelchair van). To say we are drowning would be an understatement.
My very first scan post-Lynch diagnosis found a mass and I already am facing these costs.
Donations are tax deductible (check your particular tax situation, of course) and no funds are released without proof of expense.
December 18, 2021
Hello! I uploaded a new album to show the Menard's receipt for the materials for the ramp built by WRAP & the invoice from WRAP for the city permit and nuts/bolts. Huge thanks to WRAP for building such a beautiful ramp! I will add a photo of the ramp as well. Now, we need to come up with funds to replace lost siding on the back of the house from this process, for some alterations inside the back door to make the ramp usable, and for medical care. THANK YOU to all who have chipped in and/or boosted so far! It makes a huge difference! We have a ramp now!
October 28, 2021
We are coming in on the home stretch for the wheelchair ramp! WRAP -- a nonprofit that builds wheelchair ramps -- came by to measure our back door and they provided us the estimate for materials. We need to raise about $2,000 for it, which is SO much cheaper than any alternative as we are just paying for materials, not labor. So let's get this going and raise the funds! After that, we have stair lifts left and the house will be so much more accessible. Then after that a wheelchair van. Whew. So much to do, but it's coming along ... slowly! THANK YOU so much for your help!
August 23, 2021
HUGE NEWS: We were approved by WRAP (Wheelchair Accessibility Program wrapiowa.org for help with a ramp! They will provide design, engineering, and labor and we need to purchase materials. As I have mentioned before, we were denied help by FEMA for the $59,000 in home repairs left to do after the derecho disaster, and one of those is the deck. That is anywhere from a $20,000--$30,000 estimate, depending on materials, design, and contractor. So getting help with the ramp is HUGE, but materials could still be in the thousands and so we need a big push. If you can promote my fundraiser, it will make all the difference! I will post the email from WRAP shortly and the FEMA rejection as well as quotes on the deck. We are also applying for various other programs in the city for help, but a huge barrier there is that we took in my mother after dad died and so her income puts us right over the limits. For some, expenses may count, so we are showing them my medical costs. I will update you as we learn more. THANK YOU for all of your help so far!
August 19, 2021
A quick update! Thank you SO MUCH For all of the amazing support! I recently won a grant to purchase new hearing aids, so I was able to replace my old ones and now I can hear again. We were also approved by an organization to build a ramp, and we must purchase the materials. Of course, this also means we need to repair the deck that was damaged in the derecho disaster in August 2020. Insurance rejected the claim and we have tried every possible avenue for appeal with them and with FEMA -- no luck. After we achieve the goal for the deck and ramp, we are working toward stair lifts and other mods. We are looking into some grants that could help fill in gaps and we are also reaching out to local orgs to partner with our Help Hope Live campaign. Thank you again! It means everything!
June 20, 2021
Hello everyone! I have been sick and dealing with the intense heat wave and some other issues with repairs on the house, so I apologize for not posting for so long! I wanted to send a huge thanks to all for your support. Shares, comments, and donations are all equally amazing, and I truly feel the support of my community.
Right now, I am awaiting the phlebotemist for whole genome sequencing. They are behind due to COVID so it may be a couple months of waiting. The results of this test may or may not change the course of my treatment or how we understand my conditions, but the need for home modifications such as a ramp and stair lifts goes on!
I am reaching out to local nonprofits to hold events and possibly with contractors who may want to partner in fundraising and get the publicity of helping a disabled customer while also being paid for their work. Alan is offering to trade video & marketing work, so if you are aware of any contractors who would be open to this (or if you are one!), please get in touch!
At the moment, I am eager to raise the funds for the cyborg gloves because my grip is interfering with PT due to my lack of strength for bands, small (very small) weights, etc. I think that is my top priority for now. Each one is $1999 (they were $1400, but the sale is over alas). Shares help so much! Thank you1
June 7, 2021
Hello everyone! Just a quick update:
I am currently awaiting scheduling for a phlebotomist to come to my home for a blood draw for full genome testing. I have some upcoming tests following not-great news at the doctor, but I may need to cancel due to lack of funds.
Our biggest need right now is a van. We are often unable to include me in events because we can't fit my wheelchair and a third person in our vehicle (let alone a fourth person!).
We also still need stair lifts, my cyborg gloves for my grip, and a ramp.
Unfortunately, due to the severe damage to our home and insurance refusing to cover our deck, the only way we can get the ramp is to come up with funds for the deck, which is impossible on Alan's wages ... at the same time, we have been turned down from nonprofits because we took in my mother and they want to count her social security as household income, taking us just over the limits.
Mom is looking for a place, but she cannot afford one.
I am working hard to look for further grants, but so far, no luck. I thank you all for your support, and I hope I have better news soon!
Hoping to do an online event to raise funds, and I will have details soon.
May 11, 2021
Hello! A quick update:
Thanks to your generous donations, I was able to purchase the lift for my wheelchair! It uses the wheelchair's own battery to lift it into and out of the car. I will get a video as soon as Alan has put it together and gotten it into the car.
Meanwhile, I finally had a chance to see a new geneticist. I am not leaving my current one; she just only handles connective tissue disorders. In 2019, she referred me to a neurogeneticst, but I could never afford the followup. I finally got full financial aid this year for an appointment through another provider. I was hoping to use a genetic testing service that has financial aid as well, but because I will require full genome testing (due to the number of issues in the family history/family tree and various other questions ... she chose a different lab. This is looking to be probably around $2500-$3000 and we are looking for:
1. Hereditary Spastic Paraplegia -- confirmed in my family history and I have symptoms, but then I also have syringomyelia so it's hard to say
2. MSH6 or Lynch Syndrome, which is confirmed in my family history as well. This mutation causes a variety of cancers.
3. Mitochondrial disorder
4. I have a VUS for Classical EDS, though my diagnosis remains hEDS until we know more about my VUS. But we may find TNXB or something else -- who knows? The geneticist told me the note on my mutation on CLINVAR suggests it's likely pathogenic and in the future (who knows how long?) my diagnosis could possibly (or even likely???) change to Classical. I guess only time will tell. It wouldn't change my care, so there is that.
We are still trying to repair the house after derecho and unfortunately, our deck needs to be replaced from the severe damage. This is extremely costly and it's also the only place on the house where a ramp could be installed. This means we must get it repaired to get a ramp ... so the fundraising goes on. Thanks so much to all of you for helping! I appreciate it more than I can say!
April 16, 2021
A HUGE thank you for all of the generous donations! I am not sure how to see each one or get contact information to send a proper thank you individually so I hope you see this! I also tweeted one out. I appreciate it beyond words.
I am now over 1/10th of the way to new hearing aids! Amazing! I will keep you posted on that goal. You are the best for sharing, RTing or just saying hello!
April 6, 2021
Hello everyone! Just a quick update and thank you to all who have chipped in! I paid for an appointment / pain assessment that led to a prescription for LDN, which I started several weeks back and am still titrating on. This medication is very interesting and works by causing your body to release more endorphins, which relieves pain and inflammation. It can also help with fatigue and brain fog. So far, it's helping me -- a subtle, but real boost! So thank you!
Donations will also be put in savings toward new hearing aids, which cost $10,000 (last time I had a program where I got 50% off so I am looking again for something like it for the replacements). I have about ... 1/10th of that. It's a great start--amazing!
We continue to work on derecho repairs. I got referred to a nonprofit that builds ramps. I will apply and hopefully they can accept us into the program. They do this work for only the cost of lumber! BUT this all depends on our deck getting repaired, too. So a lot hangs in the balance, as usual.
Thank you all much for your generosity and kindness!
February 26, 2021
Just wanted to update that we received some unexpected financial help that will get me some needed appointments. I mentioned the wheelchair earlier (hooray!) and I also received some funds that will make my ECHO & a few other big appointments possible.
We talked to a stair lift company about getting one installed in our home and there is a USED one! That will be much, much cheaper (we're talking thousands cheaper) if still available when we are able to book it (if not, then we reassess or wait for another refurbished one). However, we will still need help as we have the staircase upstairs and downstairs. It adds up quickly.
The used model that would fit our upstairs staircase requires some alteration to a few of our steps, so that is something to consider, but the way the company explained it, it will be seamless. It's apparently common with older stairs. With the pandemic, and with derecho repairs, we are not sure when this would happen, but I am hoping for later in the spring. *fingers crossed* *toes, too.*
Then we would be looking at repairing the deck (also damaged in the storm) so we can finally install a ramp there. We had someone out to examine the damage and we will see what insurance says. The ramp would still cost thousands and would not be part of any insurance coverage, but rebuilding the deck after derecho damage offers a chance to make it more compatible with one when the funds are raised.
Later goals (these will depend on the financial picture quite a lot) are to remodel the bathroom for accessibility. That will be a long way off due to funds.
Much of our money right now goes to repairs for the disaster (insurance covered a lot, but we have a lot out of pocket as well, which is delaying home mods) when we are able. The goal of this fundraiser is a high figure because home mods and the things I need for my syringomyelia cost a lot of money. We keep inching our way toward it, though, thanks to all of you!
We also have been making some changes that aren't structural, but increase safety here.
I will keep updating as I receive estimates and repairs and home modifications are done.
December 17, 2020
Hello Everyone! I am going to be adding some specific needs to my Help Hope Live page. They added a feature for it. Here is the breakdown (and I will add soon officially also!)
1. Lift for fold & go wheelchair to get it into the car: $750
2. Cover for fold & go wheelchair when folded: $149.95
3. Neomano Neofect glove that restores grip using electrical signals: $2,000
4. Chair Lift: $1,000 - $3,000 depending on model/installation
5. 3x $75 copays for upcoming visits (plus since deductible won't be met, I will need to cover the rest, not sure on exact amount yet)!)
6. Echocardiogram (not sure of amount yet)
December 16, 2020
I have a HUGE update! I have ordered the Fold & Go electric wheelchair! I will have photos soon. My doctor wrote me the script & letter of medical necessity, which I will post in the photo albums. It's going to make such a huge difference in my life!
The next thing I am aiming for is this cyborg glove. My hands / grip are weak and dexterity can be an issue. This glove would allow me to grip pens and brushes better and do more with PT for my strength. I am trying for a combo of fundraising and grants. shop.neofect.com
We are working on clearing the studio space, which was filled to the brim when mom moved in after my father died. Once that is complete, we will be hopefully looking into contractors to get bids for the stair lift and we can update here with how much that will be.
Meanwhile, repairs on the house post disaster are coming along. Once those are complete, we can get on that ramp building, too!
December 8, 2020
Hello everyone! Karrie still needs a power wheelchair as a mobility scooter typically requires balance they don't have. There is a great one made by Fold & Go that runs in the $3,000 range on sale. They also make a lift to get it into the car for $750. This is a great option because it's far less expensive than a typical custom chair with power + folds so it doesn't require an expensive wheelchair van. It also can handle an incline, uneven terrain, and even harsh weather! So if we can get this fundraiser to ~$4,000 asap, this will be a reality and Karrie will have more access & independence. Thank you for any amplification and contributions! This is the chair: www.foldandgowheelchairs.com
December 3, 2020
A huge thanks to everyone who chipped in so far! I am beyond grateful. Through Help Hope Live, I have managed to stay insured and get the medications I need, which are often quite expensive. Some of our goals are much bigger -- especially home mods for safety. Last night, I almost fell down the staircase (my wrist is injured from catching myself on the opposite wall, but I am otherwise OK), and it's even clearer how crucial it is that I get the stair lift for safety --and for access to space for my art. Thank you SO much again!
November 19, 2020
Hello everyone! I have been SO slow with updates, and I am very sorry for that! I haven't been feeling well and have been dealing with the after effects of the derecho that hit Iowa as well. We at first thought our house was ok, but it turned out to have $40,000 or so in damage, so lots to do! Anyway, THANK YOU so much for the help. I really appreciate it! I don't have much to update other than I am still insured thanks to YOU! And I have been able to pick up my meds.Thank you, thank you! It means the world!
July 30, 2020
Just a little update. I finally had some blood work done to figure out the cause of this crushing fatigue and increased pain. It's different than the kinds of fatigue and pain I usually get. Earlier in the week (or was it last week already?), when I took a very short walk with Alan, I was unable to get home and he had to go get the car to pick me up. That is SO not like me!
I am being sent for another echo as well, which is long overdue as it is. Not much news. I just want to feel better and get back to making art.
July 25, 2020
Thank you so all so much! I wish I could click on individual messages or donations and send personalized thank-you's! This platform doesn't have that feature, so I hope you all see this!
Quick update that I am being sent to the infectious disease specialist as I cannot seem to get better. First, I need to go through internal medicine, so I made that appointment. It's end of August and I need to hopefully move it to sooner. In the meantime, I am awaiting another test result. This means I may finally start getting some care to get better from this illness + infections on top of it that have not resulted with multiple rounds of antibiotics.It's going to cost money, though!
In the meantime, I have obtained my uncle's and father's records to take to the neuro geneticist, but I was still waiting on the records from my father's cousin. Those are coming soon. They will help the doctor because insurance is not going to cover genetic testing for the other condition in my family without some kind of documentation. This would be on top of the EDS.
Hope you are all doing well and staying safe. Wear your masks!
July 20, 2020
I have had a few interesting responses to my campaign along the lines of "well you can walk, you don't need a wheelchair or mobility scooter."
I'll take this as a chance to educate you about the complexities of mobility!
Did you know many people who use a wheelchair or scooter actually can walk? Maybe just a little, or maybe only on some days, but they can!
I exist in a kind of between space ... I can walk, but I actually can't walk, at least not without significant aid. I have an ataxic gait and recurring falls and injuries (including dislocations due to the torque on my ankles and knees because I also have Ehlers Danlos Syndrome).
I have lost vibratory & other sensation in my legs and feet, which means I also don't get sensory feedback through them while walking. Doesn't sound like a big deal until you lose it! Imagine not feeling your steps. I wish there was some way to replicate that for you.
Even though I have lost protective sensation through my arms, and hands, I feel blunt touch but not pinpricks or burns. It's due to where my spinal cord is getting damaged and is called "dissociated sensory loss." Different parts of the spinal cord handle different sensations so I don't feel much (or at all) cuts or burns, but I can feel a touch. I know, it's weird, but it's a core feature of syringomyelia. It's why when I got tattoos (prior to diagnosis, so I had no idea why at the time), I didn't feel much of anything.
Anyway, I wind up kinda tapping or even kinda pounding (not really pounding but not sure of the right word here) my cane a lot to get grounded, which is ... not great for my wrist and fingers cause again: EDS. It's also common with oscillopsia to do this as I need to get a feel for where things are/the ground/where I am stepping. I kind of feel my way. I mean, I can see, but I can't see (another weird complexity!).
This presents its own problem when you consider that my thenars have wasted from syringomyelia, significantly weakening my grip. The cane can sometimes be very hard to use. I do have a rollator and it is better, but I still have times where I am going to need more -- more and more it seems.
There are also ambulatory wheelchair users who can walk without gait disturbances or even without another aid. They have valid reasons for needing a wheelchair or scooter, too (pain, weakness, fatigue, etc.)! It might surprise you how many wheelchair & scooter users are ambulatory, actually.
Neither situation is worse or better -- just different.
Also, I can't drive and there is very limited transit here without great access. Paratransit exists, but it's its own problem (often late or without slots, very expensive, you have to book well in advance). Sometimes, I'd like to hear last minute about something or just feel like going out and ... go! Like everyone else. Or be able to go on my own, have some alone time, enjoy the journey. Or not pay outrageous prices every time.
I hope this helps to explain it! Thanks so much for reading!
June 23, 2020
Thank you so much for all of the kind messages! I wish I had a reply button to send a message to each of you, so I hope you can see this. Thank you SO very much.
Just a quick update: I have been sick since early March. Just resting at home & was instructed to quarantine. Otherwise, I am awaiting genetics, immunology, and neurology followup.
It's still a priority to get home modifications complete, such as ramps and something to make stairs safer--whether it be a lift or stair steady.
I've had significant flareups of my chronic conditions, probably due to this illness. Trying to manage it all.
Thank you all SO much again!
April 20, 2020
Just a quick update that I was finally tested for COVID19. I have a followup on Tuesday (via telemedicine).
April 11, 2020
I am sorry for the delay in updates! I hope everyone is doing well and keeping safe! Generous donations helped pay for my most recent insurance premium, and I cannot thank you enough! They also helped pay for medications, which was so helpful in this time of COVID19 as I did manage to get a few months of some of them to avoid too many trips to the pharmacy.
I apologize for the delay in updates. I came down sick, possibly with COVID (tests in Iowa are very hard to get) or possibly with some other respiratory illness. Flu & strep were negative. It feels like pneumonias I've had before but also very different. The fatigue & lung pain have been crushing.
I am working toward paying May premium and hopefully getting an all-terrain rollator since the sidewalks where I live are not in good repair. All appointments are currently on hold, though I am also fundraising for a telehealth appointment for a genetic counselor and some further testing. Otherwise, just resting for now.
So sorry I can't write messages to each individual. This platform shares your encouraging messages (thank you!), but there isn't a place for me to click to reply. Please know how grateful I am for all your help. STAY SAFE & Stay Home if you can! Much love, Karrie
January 20, 2020
Just a quick update that I was able to pay my February 2020 insurance premium and I posted the receipt in a photo album. This was made possible by my fundraiser as a large premium increase is threatening to force me to cancel coverage. Every month is going to be tenuous like this, I fear, though hopefully I can keep it going each month while working toward home modifications, testing and mobility aids.
One huge problem right now: I am fighting with insurance over my epilepsy medication, which is due for refill. It will cost $1,122 until insurance processes an appeal. They covered it all through 2019 without much issue, but for some reason, they are not processing the appeal in 2020. It's odd because the formulary for 2020 shows Tier 4 with no Pre-Auth, and yet, they are treating it as non-formulary. I can apply for assistance, but it takes time to process the paperwork. Stopping an epilepsy medication suddenly is dangerous. Seizures, death, etc., can result. And my medication, while amazing, is my last ditch. Others either didn't work or caused severe psychiatric & physical side effects.
Hopefully I can get this resolved soon, but I am running out of medication, and last time it happened, I had seizures that caused a host of issues (losing a tooth, cracking others, injuries, including head injury).
THANK YOU SO MUCH for boosting, commenting, donating, and just generally being so supportive. I appreciate it more than I can say.
January 17, 2020
A huge thank you to everyone who has boosted, donated or said a kind word!
Help Hope Live has been incredibly supportive to work with & they handle all the funds so you know they go exactly where stated.
We are aiming to get some videos and photos posted soon to show the plans for the modifications. At the moment, we are in a snowstorm and hunkered down indoors.
Hope you all are safe and having a wonderful new year.
December 6, 2019
Last week, the landscaper came to slope the sides of the newly repaved driveway. Attached is a photo. This was several thousands cheaper than retaining walls + with the wet soil here, will not have the issue of bricks coming loose like they have done to all our neighbors. I will post the receipt in my albums (it was $2140), and we are focusing on raising funds to cover it, as it was an essential component of the repave.
We are also focusing on insurance costs for 2020. We have a large increase in our premium and it could lead to losing insurance. We are hoping to get at least some of that increase covered each month as well as medications, genetic testing, MRI angiography, and a GI visit.
Other important plans for 2020: Chair lifts, a ramp, and access mods to the bathroom and kitchen--if we raise funds, of course!
September 23, 2019
Thank you so much for the support, everyone! RT's, kind words, support and donations are all amazing! We are on the October schedule for a concrete contractor for half the driveway (all we can do for now on current budget--rest will come later).
So now the challenge is getting as much money raised toward the sloping as possible. The sloping occurs along the sides of the driveway where the re-grade will leave a lot more land exposed. We had looked into retaining walls, but they cost twice as much and the neighbors have had issues with theirs due to the wet and mushy land in this area. Luckily, a landscaping contractor across the street from us says we can do the sloping instead so that is what we will do. It's an essential component of the driveway regrade/repave, but done separately since it's not concrete. It will be approx. $3,000 (vs. $6,000 for retaining walls, yikes) so aiming to get at least $2,000 more in donations this week if we can! Thanks so much!
In the meantime, my appeal for coverage of my $3,000 genetic test was denied so that will be a large bill or payment plan and we will focus on that next if need be. I am still fighting it with the state.
Thanks for your support! It makes a huge difference, and I appreciate all of you more than I can say.
August 15, 2019
Thank you so much for all of your support so far! Between generous donations, RTs, Facebook shares, or replies of support, it all makes a difference.
I apologize for taking so long to write a thank-you note and an update--I wasn't sure how to do it & then we had an intense and busy couple of months with my father in hospice. He passed away August 1st.
As for the house and my health ... We had a contractor come back out this week and discuss ideas to bring down their bid with some changes to their initial plan. This would be for about half the driveway, to address the most pressing safety concerns with the grade and the shattered concrete. (The rest needs work, too, and is a problem for wheeled mobility aids also, but we have to get these pressing concerns addressed now & can do the rest later). It looks like we can get on that schedule! So that will begin in October.
To make things with the house go even better, I would love to see the fundraiser get to at least $6,000 as soon as possible because in order for the driveway to be done, we must also re-slope the lawn surrounding it, which is another $2,000-$3,000. Yikes! But it's way cheaper than retaining walls & the neighbors did it with good results.
$10,000 even better so we can get going on chair lifts as well.
Once the driveway is done, we can start working seriously on the ramp out the back--with donations, of course! It didn't make sense until we had the driveway plan in place since I would roll out and ... be stuck.
Irony--when the contractor was here, they witnessed a fall off the step. It was almost like an exclamation point on how urgent this really is.
As for health, due to the pressing needs with the house, I haven't been able to afford my imaging or appointments, though I do have a referral for a specialist in genetic neurological conditions as it appears I may have a second genetic condition that runs through my family as well. (More on that when I know more.)
My mobility has decreased and I've had injuries and falls, as well as increased pain. A big contributor to injuries and pain is the grade of the driveway, so it will be a huge relief to get it addressed.
That's it for now. We will get some videos up soon. We were so busy with my father in hospice for Alzheimer's that we didn't have a chance to film any.
Photo Galleries (6)
Loading Images
Guestbook
June 1, 2023
Love you Karrie!
Ashley Spendlove
May 18, 2023
solidarity and love
sasha weiss
May 8, 2023
sending love to one of my favorite aquarians ever to incarnate. love, Natalie
Natalie Levin
May 2, 2023
We care about you, Karrie!
Hayden Mazzarelli
April 30, 2023
Sending you all the best healing vibes!
Leona Lee
March 10, 2023
Keeping you in my thoughts, Karrie. I hope you meet your goal by July!
Yvette Renee
March 4, 2023
Sending love. ❤️
Avery Guess
March 1, 2023
Had some extra this week, so I'm sending it your way.
RC P
February 9, 2023
Good luck and solidarity.
Daira Hopwood
February 6, 2023
Happy birthday!!!
Kayle Hill
February 6, 2023
Happy Birthday, Karrie! I hope many people donate on your birthday. Hang in there.
with love,
Yvette
Yvette Renee
January 24, 2023
<3
Juan J
November 30, 2022
xoxox
Gayle Brandeis
November 30, 2022
Thinking of you on #GivingTuesday.
Yvette Renee
August 19, 2022
Sending you love and support x
Ashley Hultman
August 10, 2022
❤ From Twitter
Lisa Hill
August 1, 2022
Best wishes to you as you get closer to your goal.
Anonymous
July 29, 2022
I really love your Log Project! I wish I could have seen it in person (I'm in Omaha). Hope this helps reach your goal for surgery.
Anonymous
July 29, 2022
Good Luck!
Michele Gomez-Rubio
July 29, 2022
Dear Karrie, I wish I could give more. I have my fingers crossed that your surgery will go ahead and be successful. Sending love from an Australian member of #NEISvoid
Anonymous
July 28, 2022
Solidarity
Anonymous
July 26, 2022
<3
Alex Haagaard
July 23, 2022
Hope it helps <3
Harley Primrose
July 20, 2022
Good luck
Daira Hopwood
July 19, 2022
Hang in there. Sending lots of love and hope for your successful surgery.
Tahirih Walsh
July 7, 2022
For Karrie the Cat - In memoriam of Erin Gilmer. She would have supported this GFM.
Yvette Renee
July 5, 2022
I hope this helps
Brittany Ashline
July 3, 2022
Wishing you peace, comfort, healing and care!
Anonymous
June 29, 2022
I wish it could be more.
Jennifer Kathleen Gibbons
June 29, 2022
I know it's not much but hopefully it'll help boost the algorithm for you, all the love x
Kaitlyn Roskruge
June 29, 2022
:)
Anonymous
June 24, 2022
On this terrible day, you are inspiring.
Christine Lombardi
June 22, 2022
I know it's not a lot but I hope that it's something <3 Sending peace and light and love
Lauren McIntyre
June 22, 2022
Hoping you get fully funded <3
Hilary Prue
June 13, 2022
❤️
Niamh Phillips
June 13, 2022
Best wishes in your journey in protecting your health.
Anonymous
June 9, 2022
❤️❤️❤️
Angie Glaser
June 8, 2022
<3
Bea Temple
April 11, 2022
Best wishes
Anonymous
March 28, 2022
Sending hope & courage to you
Alison Whitley
March 5, 2022
<3
Rachel Sommer
March 5, 2022
Good luck, Karrie. Stay strong ✊
Chris Wolf
March 3, 2022
Solidarity & warm regards from Skelekorgi & Snoutpunk <3
Jaime Hutto
March 2, 2022
Holding space for you. Lots of love!
Anonymous
February 26, 2022
Please keep hope in your hearts
Bradley Hamilton
February 23, 2022
Sending love <3
Alex Haagaard
February 19, 2022
Best wishes in caring for your health.
Andrea Shettle
February 19, 2022
In solidarity.
Liz Jackson
February 17, 2022
Best of luck!
Alexa Appel
February 13, 2022
I know every bit helps. Thank you for all your advocacy and teaching. I’ve learned a lot from you and have been able to support other with the knowledge you’ve shared with us over the years. Love you!
Paula Puffer
February 11, 2022
Helping when I can. Always sending love.
Gayle Brandeis
February 9, 2022
I am so happy to help, Karrie. I am such a fan of you, both artistically and as a human. Loving you from Philly.
Natalie \Levin
February 9, 2022
Thinking of you
Laura Alonso
February 8, 2022
Sending good wishes, compassion, and hope. You are worth it. You matter. Take care of yourself.
Kathryn Mhatre
February 8, 2022
Hope this helps just a little bit.
Sarah Leeser
February 6, 2022
Happy birthday, Karrie!
Leigh Angel
February 3, 2022
With my love and respect.
Bridget McDowell
February 3, 2022
Cheering you on, Karrie!
Jennifer Lunden
February 3, 2022
Here's hoping you are funded, soonest! Sending love and best wishes for a negative test.
Eaton Hamilton
February 1, 2022
Good luck, Karrie <3
Anonymous
February 1, 2022
Good luck, Karrie <3
Anonymous
January 21, 2022
Good luck
Daira Hopwood
January 19, 2022
Love you, Karrie!
Gayle Brandeis
January 15, 2022
It's not much but I hope it helps!
Meagan Hawkins
January 7, 2022
So much love to you.
Gayle Brandeis
December 31, 2021
Blessings to you
laura Keith
December 31, 2021
I know it's not a lot but wanted to contribute where I can ❤️
Keisha James
December 27, 2021
Zebras <3 zebras! Sending solidarity and gentle hugs.
Anonymous
December 24, 2021
I hope this helps you x
Carly Findlay
December 17, 2021
Love you, Karrie <3
Gayle Brandeis
December 4, 2021
Your voice & your art are so needed. Wishing you better times ahead.
Jennifer Stitt
December 4, 2021
Hope the ramp gets built!
Anonymous
December 2, 2021
Thinking of you. Hope this helps.
Genya Coffey
December 2, 2021
Please help with a donation. The arts community needs to support its members.
Rebecca Cuthbert
November 30, 2021
Access is love, but should also be standard! @sexabled
Robin Wilson-Beattie
November 18, 2021
Here’s my little bit! Good luck with the ramp!
Sharon Adarlo
November 5, 2021
In honor of Big Moop. ❤️
Gayle Brandeis
November 5, 2021
So sorry for the loss of your Big Moop.
Christine Tully
October 2, 2021
Good luck
Daira Hopwood
September 30, 2021
Keep going. Keep going. A stranger who thinks you are great on twitter, is in your corner.
Zachary Hug
September 13, 2021
Sending best wishes for brighter days ahead.
Michelle Raines
September 13, 2021
Sending a big hug to you and your mom, Karrie. ❤️
Rebeccah Leiby
September 1, 2021
Thank you for your work for disability justice, wish I could do more. You deserve good things.
Anonymous
August 27, 2021
Sorry can't do more. Karrie's courage is inspiring.
Christine Lombardi
August 26, 2021
Sending hugs from one disabled artist to another.
Rua Arnold
August 26, 2021
Much love
Michael Davis
August 23, 2021
i love your mask! good luck! (sorry i'm on disability myself and can only give a little but i give it with all my heart).
sacha kenton
August 23, 2021
Hello,
I hope you can raise the amount you need and that my small contribution helps.
Kind regards,
Evren
Anonymous
August 3, 2021
Good luck Karrie!
Eliza Lawler
August 3, 2021
Just a little something. I hope it helps! Love you! <3
Lara Ameen
August 2, 2021
<3
Felisha Gonzalez
July 21, 2021
Someone helped me once, so I’m paying it forward now that I can.
Anonymous
July 21, 2021
Thank you for all you do to help and support others.
Heather McCoy
July 21, 2021
<3 <3
Anonymous
July 15, 2021
Hope this helps a little bit! Sending you love.
Lindsay Czitron-Graves
June 25, 2021
Hugs to you, Karrie!
Jordan Rosenfeld
May 14, 2021
thank you for all you do for the disability community. Everyone deserves to have their needs met <3
Anonymous
May 13, 2021
We love you, Karrie!
Elizabeth Quant
May 4, 2021
I wish I could do more. Hang in there and take care. ❤️
Laura Miers
April 21, 2021
Karrie Higgins is a stunning writer/artist/activist and is so essential to the crip community. They rock.
Anonymous
April 17, 2021
Karen I have read some of your blog and was very impressed with your writing so I wanted to make a small contribution. I hope you achieve your fundraising goals. regards Susie
susie breuer
April 16, 2021
Been reading and enjoying your tweets. <3
Halley Bondy
April 13, 2021
I hope you can get your hearing aids
Heather Williquette
April 13, 2021
good luck!!
Anonymous
April 2, 2021
I wish you wellness and love. I hope you feel better and can get everything you need and deserve. I wish I could give more.
Anonymous
March 19, 2021
Karrie deserves the best in life. I can't give much but Karrie deserves to create and be comfortable in their own home.
Erika Christiana
March 17, 2021
I hope you get what you need Karrie. You deserve it so much.
Jessica Diamond
March 12, 2021
Thank you for the opportunity to chip in!
Sam Hughes
February 18, 2021
I hope this helps a little with groceries or meds or whatever else could help your quality of life right now. Thanks for all your messages of inclusivity, accessibility, and better protection of the rights of the disabled.
Anonymous
February 12, 2021
Sending love and support to you and your family.
Gayle Brandeis
January 12, 2021
Keeping you in my thoughts, Karrie!
Yvette Renee
November 24, 2020
Can I post on ig with/without hashtags?
Manaal
November 23, 2020
Wish I could do more. Hope this helps.
Jake Sidwell
November 23, 2020
I hope you can get what you need sweet lady!
Elizabeth Browne
November 23, 2020
Thinking of you
Anonymous
November 23, 2020
Love you <3
Kayle Hill
October 29, 2020
Lots of love x
Carly Findlay
October 19, 2020
I know it's not much but I hope it helps!
Ashley Spendlove
October 19, 2020
Wishing you all the best.
Alexis Salt
October 16, 2020
Everyone should pitch in for this brilliant woman
Christine Lombardi
August 23, 2020
Love you, Karrie. A little something to help during this difficult time ❤️❤️❤️
gayle brandeis
August 19, 2020
I'm so sorry for all you're going through. I hope this helps.
Sarah Smith-George
August 11, 2020
Seems like you could use it more than me. Good luck getting the foods and stuff you need post nightmare storm.
Elizabeth Browne
July 22, 2020
We love you Karrie!!!!
Anonymous
July 22, 2020
Wish it could be more.
Cate Fitt
July 22, 2020
❤️
Genya Coffey
July 8, 2020
Love you ❤️
gayle brandeis
July 8, 2020
All good wishes to you!
Adria Quinones
July 6, 2020
Peace and Love, Darryl and Jan
Darryl Houston Smith
June 29, 2020
Love you, Karrie! xoxox
Gayle Brandeis
June 18, 2020
Sending you all the love, support, and spoons. Thank you from the bottom of my heart for what you do. You are a treasure and I really hope you can get this funded ASAP
Paige Lewis
June 18, 2020
Karrie inspires me every day. Still can't believe this is how we fund health care in this country.
Christine Lombardi
May 18, 2020
Accessibility is SO important. I really appreciate your Twitter feed. Sorry things have been so hard
Patricia Lapointe
April 9, 2020
Wishing you well from afar
Anonymous
April 6, 2020
Long time reader, haven't donated yet. Saw your tweet about having a grocery break and it was so awful and relatable job its mundanity that I needed to donate. I know it's not much but hopefully it'll help you get through to the next frustration or trial.
Anonymous
April 1, 2020
Thinking of you. As a fellow hEDS dear human you've been so relatable and informative. I appreciate your writing and disability work.
Melanie Casey
March 28, 2020
Wishing you well as you fight this respiratory illness
Emily Baumbach
March 27, 2020
Love you so much, Karrie ❤️
gayle brandeis
March 27, 2020
My family wishes you all the best as you search for answer and heal from sickness.
Angela Minear
March 12, 2020
Love you, Karrie!
Gayle Brandeis
February 5, 2020
Your writing moves me. Thank you.
Anonymous
January 23, 2020
Hang in there -- wish it could be more.
Alessandro DiFrancesco
January 18, 2020
Best wishes for a successful campaign!
Greg Girgenti
January 8, 2020
❤️❤️❤️
Sampi Martoo
September 19, 2019
hope all goes well!! stay safe!
seth
September 17, 2019
Listen to gloryhammer
Brian Doyle
September 11, 2019
Love you Karrie <3
Jill Khoury
August 17, 2019
Rooting for you, and thank you for your incredible, insightful writing.
Ashley Hultman
August 8, 2019
Karrie,
I am sorry that I only have 50 bucks to give. I want to do much more than I actually can. I am going to try to do this again next month once my disability check hits my account.
You're an amazing person. I wish I could take some of your pain (your father's death and everything around that, your health, worry about the house) onto my shoulders to make it easier for you. I also recognize that this whole letter is clunky and poorly written and I don't want to make it worse than it already is so I'm stopping here. I don't know how to write how I feel and that was the best that I could do.
ezerinis havetputsomething
July 30, 2019
Hope this helps...wish it were more. Hope it will inspire other donations.
Erika D.Jahneke
July 30, 2019
Every little bit helps right? Best wishes.
Ken Spice
July 29, 2019
best wishes to you and your loved ones
Kel Morris
July 29, 2019
Happy to help with a monthly recurring gift. Thank you so much for the space you create.
Yvette Renee
July 29, 2019
Hi Karrie, I'll try to make another donation soon, but I wanted to be sure to throw something in now.
I'm one of your friends from Twitter. I also am a client of HHL who has been helped so happy to pay forward when I can.
Nicole
Nicole Seefeldt
July 29, 2019
The most love to you. I hope this helps. You deserve an accessible house and an accessible life.
Emily LeMaster
July 29, 2019
I wish you all the strength and love as you get through these hurdles.
Melissa Stone
July 28, 2019
Sending light & love your way.
Michael Mann
July 27, 2019
from @wordglass on Twitter
Mari Kurisato
July 26, 2019
<3 to you, my friend
Rachael S Williams
July 23, 2019
Karrie I am sending you love and prayers and light. <3 love, Natalie in Philly
Natalie Sterner-Levin
July 23, 2019
Thinking of you and hoping against hope the driveway can be repaired asap before the onset of cold weather. Wishing you all the funding for the medical care you need. Sending love
Jane Eaton Hamilton
July 21, 2019
I hope this little bit helps. ❤️❤️
Erin Khar
July 14, 2019
Came across this on Twitter. We took a couple of Fiction Writing Classes at U of Iowa in the mid-90s. You were always kind, generous, and helpful to your fellow writers and I\'m glad to help.
Andy Halberstadt
July 14, 2019
This person deserves everything good.
Laura Howden
July 11, 2019
❤️
Kimberly Bell
July 11, 2019
Thinking about you, Karrie, and the great work you do in the world.
Sandra Beasley
July 10, 2019
Yarrow Rubin
July 4, 2019
Wish I could have given more.
Stori
July 3, 2019
We don’t know each other, but my heart goes out to you. I was in a wheelchair for awhile and I was literally trapped in my living room. I hope you get what you need. ❤️
Etawi O'Byrne
July 2, 2019
Thinking of you and hope this little bit can add up.
Jess Aiello
June 25, 2019
Accessibility means greater facility and independence, and broader engagement with the world--goals not only for writer and artist Karrie Higgins, but for every person with a disability. Karrie, thank you for demanding the accommodations and devices you need to live a full life. As Frederick Douglass said, "Power never yielded anything without a demand."
Angele Ellis
June 23, 2019
<3
Moco Steinman-Arendsee
June 22, 2019
❤️❤️❤️
Genya Coffey
June 22, 2019
You do so much important work for this world, I am so glad I get to support you monthly. Thank you for your art, your activism, and research!
Elena Salyer
Mail a Check
Karrie HigginsMake checks payable to:
Help Hope Live
Note in memo:
In honor of Karrie Higgins
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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