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Charlee has a genetic disorder called Hypermobile Spectrum Disorder, or HSD.
HSD refers to a group of conditions characterized by excessively flexible joints that cause systemic symptoms throughout the entire body and is directly related to almost every co-morbidity Charlee is diagnosed with. (She currently has 14 diagnoses that all fall under the HSD umbrella.)
In the summer of 2025, Charlee went through a rigorous and thorough evaluation by an OT at Ability KC.
Ability KC works with people with disabilities and has an excellent driving program to determine what types of vehicle modifications are needed to help those with disabilities live independently and drive.
Charlee’s assessment showed that she needs specific safety features to ensure safe driving.
Some (not all) key features needed are:
– active lane assist
– switching lane alerts/cameras
– blind spot alert
– front/back cameras
– power seat adjustment
– collision detection technology
– parking assistance
– adaptive cruise control
– comfortable seating for back and neck
– midsize/higher off ground
– …and more
Possible Customization after buying car:
– reduced effort steering
– swivel driver’s seat
Most of the features Charlee needs are found in cars with newer technology called ADAS. The features are found mostly in cars dated 2023-current. These cars are higher trim and typically run between $28k-$38k, By donating to Hope Help Live, we can use funding to cover the higher trim because the features are deemed medically necessary. (That means we buy the baseline car, donations can cover the higher trim options.)
We are still in the process of narrowing down our search, and we can update donors as we move along.
Any additional funds will be dispersed to cover the mounting medical expenses. For example, we just purchased 2 plane tickets for Charlee to consult with a surgeon in Austin, TX. It’s these types of expenses that we could use donations for partial or full reimbursement.
To summarize, our top 2 priorities at this time are:
1) MALS diagnosis and surgery
2) Getting Charlee a car with appropriate safety features.
We desire for Charlee—at 17—to begin the transition into adulthood and living independently. One of the first steps is getting her successfully (and SAFELY) behind the wheel!
If you feel compelled to help us financially meet these needs, thank you! We have called upon our village often ever since her first diagnosis of scoliosis in 2018.
We love all of you so much. ❤️
2 weeks and 1 day away…
we still do not have Charlee’s passport as her medical tape flagged Dept of Security. I’m supposed to call Sunday to check progress.
If we do not receive it by Dec 1, we will have to drive to Hot Springs, AR and wait in the office until it’s in our hands. Hopefully it comes soon!
Today I need to book airline tickets to San Francisco for 12/6. Then we leave SF on 12/7 which is a direct flight to Manila.
Breathe. We got this. I’m feeling joy and uncertainty. What an odd mixture.
Hi! I thought I’d share a brief update on Charlee. Ty for watching!❤️
LIFE SAVING SURGERY IN THE PHILIPPINES!!!The absolute BEST surgery for SMAS/MALS is called the Alvear-Fowlkes procedure. There are currently only TWO DOCTORS in the entire US who are actively following this exact procedure on patients. As you can imagine, they are backlogged. The procedure was created by Dr. Domingo Alvear. He is now in his 80's and travels the world teaching other surgeons how to do this life saving surgery. His first was in 1978, and he has done the most SMAS surgeries world wide. Because he cannot operate in the US, we are going to HIM! In the Philippines! Along with us are patients from Canada, New Zealand, and Australia. We also hope to see another family from Texas, who are considering joining us.We are to arrive in Manila, Philippines in December, and will be required to stay for 5-7 weeks. Obviously, this will be costly, with the surgery costing around $20K. Plus flights, food, etc. Our fundraising goal at this time is $30K. If we do end up with any extra, we will set it aside for her next big surgery or medical care. (We are meeting tomorrow via telehealth with the renal transplant team in Wisconsin.)Stay tuned as we are getting organized in our fundraising and hope to be doing several things in our community! We are also working on setting up some merch with Charlee's tattoo art. I think it will be so cute! Thank you for your continued care, love, support, prayers, healing vibes, thoughts, hugs, and texts. We love you all so much and couldn't survive the past 8 years without you!
Charlee had an appointment with a surgeon at Texas Children’s in Austin, TX. It resulted in both insight and dead ends. We have taken some of this doctors concerns back to Children’s Mercy in KC and have several follow ups. 1.) gallbladder scan on Monday- just to rule that out.2.) ultrasound to check for another common phenomenon among connective tissue disorders called “Slipping Rib Syndrome”, which means ribs move around placing pressure on nerves causing severe pain with breathing and GI. 3.) Charlee’s Nutcracker Syndrome has progressed, putting her kidney more at risk and higher priority. We have made a follow up call to her Vascular Doctor at Duke University in North Carolina. (There are no pediatric vascular doctors in KC.) 4.) Texas Surgeon recognizes Charlee may have a nerve related Vascular compression called Neurogenic MALS. He does not specialize in neurogenic, so we were referred to a neurogenic MALS specialist in NYC. Again, there are not pediatric neurogenic MALS specialists in KC. As you can see, finding proper care means travel. This can add layers of stress for multiple reasons, but we will continue to fight to ensure she is getting proper care. To top of off, Jim (Charlee’s Dad) isn’t getting paid during the government shutdown. We have lived through shutdowns before, but the timing of this one is definitely not ideal. Because of that, buying a car is on hold. Yet, we press on! This weekend I’m doing some photography pop ups to benefit this catastrophe fund! I’m hoping for a good turn out and hopefully great weather! I’ll update next week after her imaging! Thank you for continued support! ❤️
Charlee & Jim just got back from a short trip to Austin, TX to visit a surgeon at Texas Children’s Hospital. We are still waiting for a follow up call after some imaging. The frustration with vascular compressions is…very few doctors are specialists. It’s extremely important to find a knowledgeable expert which makes it a very difficult and challenging process. It requires so much effort on our part to do loads of research and being an active participant in support groups. We learn so much from others in our same situation!We need to check, double check and triple check for MALS. From what we are learning, it can take multiple attempts at same imaging, and also requires nerve block to assess. This is our next step.
It’s been a full week of school and appointments. Every week, Charlee goes to physical therapy and pain management. This week we also followed up with GI, and we officially got a referral for a MALS surgeon in Austin, TX. He will tell us what additional tests he wants done to determine if she does, in fact, have MALS. She is working hard to catch up on school work. Tonight she gets to see one of her best friends from elementary school years, and late tonight we may go to a haunted corn maze! I think I’m more excited than the teens. Getting to and from Austin will be another expense that will be ongoing for a bit. We appreciate your support. -Misty
Charlee Update: Charlee was recently released from the hospital but we were left with more questions than answers. Her pain is often unbearable. She cannot eat anything at all, so she’s back on NJ tube. NJ is a tube that goes into the small intestine, bypassing the stomach. (Since food increases her pain.). CMH did a good job stabilizing Charlee and monitoring her as she slowly transitioned over to tube. (You can look up Refeeding Syndrome for more info.)While the tube is keeping her alive, it doesn’t manage or fix her pain. The pain is now almost always constant. We had a follow up yesterday and I had messaged our GI with a request. Please carefully review all recent imaging and see if there is any indication of MALS. MALS stands for Median Arcuate Ligament Syndrome. Your diaphragm (the muscle you use to breathe) has a fibrous band called the median arcuate ligament.In some people, this band presses down too tightly on the celiac artery, which is a major blood vessel that supplies blood to your stomach, liver, and other organs.This pressure can also irritate the nearby celiac nerve bundle.GI found 1 report that noted narrowing of the celiac artery. Ding! Ding! Possible MALS. However, no formal dx yet, as more tests will be ordered. CMH doesn’t have a MALS expert, so once again, we are looking at specialists across the nation. Stay tuned! So…she’s still trying desperately keep her head above water at school in the midst of yet another medical crisis. 💔I wanted to share GOOD news too! Charlee met another senior girl who lives in KC and has MALS & SMAS just like Charlee! She was admitted at same time, and has a G tube now. Char has been saying for years she wished she could find a buddy locally…and she has. So proud of these young women. In addition, she got a couple visits from therapy dogs. 🐶 so even though hospital stays suck, we loved connecting with new buddies. ❤️She also painted a beautiful heart…it’s now hanging on her bedroom wall and it’s definitely a favorite. Sam was able to hang with his friend’s family in Colorado while charlee was hospitalized. This helped us immensely. He was in the mountains, (his therapy) and got to summit his second 14er. I was teary I was so proud of him! Chronic illness is tough for siblings too. ❤️
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Charlee, I love you! I am rooting for you!
Kassaundra Mcknight-Young
We are praying for you, Charlee! Love, Robin & Anna
Robin Beem
Prayers for Charlee and family. May God bless you with a successful surgery and safe travels.
Andrew Hilbrich
We love you Charlee!!!!
Darrick Reed
We have followed Charlee's story over the years online as we have attended church with Jeff & Sally. Lifting you up in prayer today!
Dan & Ashley Bergen
Praying for this sweet girl. May God, in His will, heal her body.
Melissa Gronendyke
Praying!!
Valerie Wolf
Praying for your full recovery and safe travels to the Philippines. May you feel God’s presence and help you through this challenging time. Love, Zach and Brooke Brumm
Anonymous
“Sometimes your only available transportation is a leap of faith.”— Margaret Shepard
Thinking of you all!!
Laurel Clark
In our thoughts and prayers.
Rachael Thomas
Praying for you
Anonymous
I'm so happy to know there's a possible solution! All my live and a pile of chocolate to you!
Sarah Ryherd
You’re strong and you’re gonna be able to have all the groovy fries before you know it!
Paige DeBrot
Sending you all love and hugs!
Katy Gitto
Charlie has been in our prayers and will continue to be.
Mark & Debbie Dalton
Thank you for the beautiful photos. Praying for you and your family as you continue this journey. Small world! Go NWS!
Jamin Lee
Praying for you!
Debi Lee
Raychel Ecker
raychel Ecker
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Charlotte Terrell
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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