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Background:
My wife, Jen, was officially diagnosed with relapsing remitting multiple sclerosis in 2009. The disease began to progress quickly in 2012, leading up to several hospitalizations and IV treatments per year (7 in 2014). The symptom that affects her the most is fatigue/weakness, though she also experiences blurred/double vision as well as a host of other symptoms. At age 39 she owns a cane, walker, and wheelchair. She is unable to work at this point.
There is hope! A therapy, Hematopoietic Stem-Cell Transplantation (HSCT), done in other parts of the world, as well as in a research study in Chicago, IL, can completely halt the progression of Jen’s disease. The vast majority of patients also receive a level of recovery from their current symptoms. With two young daughters (ages 11 and 6) she has much life to live still. God has a plan for her. We need to stop the progression of this disease!
This therapy will use a combination of chemotherapy and Jen’s own stem cells. She will be in the hospital for 4-6 weeks. Unfortunately, while the benefits are high, so are the costs. Jen has been accepted to have the treatment in Moscow, Russia in 2017 but she is also applying to the program in Chicago to have it done sooner.
This page is designed to allow others to help as a community to build a bridge from disease to deliverance, from flare to freedom. Each donation will bring Jen closer to easing these daily struggles and allow her to participate more in each day the Lord has blessed her with.
We have chosen to fundraise with Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility to the full extent of the law for donors. Donors can be sure that funds donated will be used only to pay or reimburse medically-related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
We need your help! Besides donations, there is quite a list of other things with which we could use assistance. These are mainly things to help fundraise. If you are willing to help, we are in need of volunteers to help plan and organize fundraising events, places to hold events, photographers, contacts, childcare… if you have time, we have a need.
Thank you for considering assisting us in this journey!!
It's been two years since the transplant and my Northwestern team says I am still in remission! The goal of treatment is to stop progression; any improvement in symptoms is frosting. I am no longer in a wheelchair and don't even need the cane anymore! We are incredibly THANKFUL, not just to God, but to each and every one who has supported us in any way.
I am now dealing with post effects of the medications used to treat me (mainly high dose steroids for many years) as well as from the MS. The old MS plaques cause symptoms to temporarily resurface when I am sick.
There is so much progress! Who would have thought that I could be driving again? Swimming with the kids? Homeschooling Maddie for a year??
Dr. Burt, at Northwestern, answered a piece of a puzzle - the serious infections I had last year were caused because my immune system had tanked again. They now have me on IVIG every four weeks to boost it. I reacted severely to the last one - it lasted almost two weeks. (Very bad timing as John had come down with another round of shingles as well as his Crohn's being active... but that's another story).
This is hard. Dramatic. We've lost loved ones bc of the drama. In the midst of it, we are blessed with loved ones that have joined or stuck by us with love and support. We are blessed with the four of us - all with various health issues - able to see joy and laughter a lot of the time. We are thankful for the progress that I've made!!
06/10/16: Laying in bed with a broken back. Insurance has denied paying for the surgery needed. We are using what is left in the HelpHOPELive fund but concerned there will not be enough for any complications or follow up for the stem cell transplant (which was successful, Praise God!!).
Praise report: I started PT yesterday! I am nervous bc of my fatigue, but excited to make some progress too. This PT has experience with chemo patients and wants me to take it very slow, steady, and stick with the plan. I agreed! Most of the progress of HSCT is seen in the first year. I want to take that year very seriously and do what my part in this process. We wouldn't be here without ALL of your help and we take your investment seriously as well. God is so good to get us this far! Thank you, Jesus!!
Well, I haven't been timely about updates and I apologize! I had the stem cell transplant at Northwestern Memorial Hospital in Chicago in December 2015. We are INCREDIBLY grateful to all of our donors - without you this would not be possible!!!! Thank you!!!!!!!!!!!!!
It's official!!!! We have dates for treatment!!!!! NOW it seems real to me. A little more testing in early October and then I will head back up to Chicago in late October. In the hospital one night for chemo and then discharged to live downtown near the hospital. At the end of the ten days they will collect my own stem cells and I can come home. Home all of November and then back to the Windy City for most of December for more chemo and transplant. Goodbye MS!!!!
A week ago we got the wonderful news - INSURANCE APPROVED THE COVERAGE OF THE STEM CELL TREATMENT!! We are so very thankful to God!!!!
A huge thank you to Alibi's Bar and Grill for hosting the Golf-A-Thon and raising $4,000 for our HelpHopeLive campaign! Thank you to my in-laws, Tom and Linda Davis, for suggesting our cause to Alibi's. The bills and expenses are already mounting. This money helps immensely with expenses related to my stem cell transplant!!!! Thank you!!!!
GREAT NEWS: The new insurance approved me for pre-testing!!!!! (Not yet for transplant, but praying that is the next step). Pre-testing is several days outpatient in Chicago. A HUGE THANK YOU to our prayer warriors and donors that have made the new insurance and trips to Chicago possible!!!!
What a week! My insurance was cancelled due to an error (not on our parts). Panic set in. AND THEN we were able to sign me up for a brand new policy - one that has a history of covering transplant!!!! So excited to see what happens after it begins June 1st!!!!!!!! We would not be able to do this policy without our amazing donors. Thank you ALL!!!!!!!!!!!!!!!!!!!! : )
SOLD OUT!! Our kickoff Spaghetti Dinner is sold out with sold and preregistered tickets. We feel so blessed to have this many people coming out to support us!! : )
Just a few more days until our kickoff fundraiser - the Spaghetti Dinner!! SO excited to see everyone!!!! : )
Some of the best news of my life this week... ACCEPTED off study (best way)!!!!!!!!!!! Thank you, Jesus!!!!!!!!! Not sure when it will be yet. Next will be the battle with my insurance. Northwestern assures me they are ready to fight for the win. MS, you are going down!!!
Well, an unexpected inpatient hospitalization came upon us this past weekend. MS flare with a side of kidney stones. Thankfully I was discharged yesterday to get steroid infusions outpatient. Praying to feel better soon! Thank you for all of your support!! : )
I've needed to sit my hands not to share this new update prematurely. The Delaware Township Community Center donated its facility to us for our Spaghetti Dinner!
Saturday, March 21st @ 5:00 pm. Dinner, dancing, silent auction, photo booth, and more! Kids welcome. Please sign up to come!!
Wanted to let everyone know that it can take a couple days for the HelpHopeLive Website to be updated. If you don't see your donation immediately, please don't panic. Thank you, everyone, for your support!!!! We really appreciate it!!
Thank you to anyone visiting our site. This process is monumental and we appreciate your support so very much!!!!
We had a whirlwind trip to Chicago last week for MRIs at Northwestern. Everyone was kind beyond words and couldn't stop talking about the progress they see with patients who have this procedure done. Appts. set to meet with the physicians in late January pending insurance approval.
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our prayers are with you!
with love :)
nellie and ole
Jen & John, glad to see this effort & want to help. Please include Mark & I as helping with the spaghetti dinner.
Melissa Maxwell
We are all praying for you extra hard. Love ya guys lots!
The JK Meyer Family
The Pillsburys are standing next to you too! Cheering you on as you are wrapped in not only God's love and strength but ours too!
Janet Pillsbury and Tim, Lily, Nicholas
Hugs and kisses from the state of Maine! <3 Hang tight!
Pam Littell
Be strong and persistent partner! God bless you and your family :)
RA
I am available to help wherever you need me! I can also help with your girls anytime! Jen has my number.
Maryclare Valentine
I love you, birthday buddy. Keep up the fight.
Amy Lang
Excited that you were accepted for treatment in Russia in 2017, but am praying for treatment here sooner than that. Sending big hugs. You can count on my support. Love you, Sis.
Karen
Hang in there Girl! You are amazing!
Raegan Wampler
Wishing you all the best Jen. Keep updates coming. Love you and to your family. Dede
Diane LaRue-Seifert
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Jen Davis
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.
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