We are fundraising for HSCT treatment in Mexico, to give her a shot at halting disease progression. This is my 20yo daughter, Taylor. Most of you who know us, know she was diagnosed with Multiple Sclerosis (an autoimmune disorder that destroys the central nervous system) back in January 2022, not long after her Birthday. Her initial presentation was fairly severe – she went from normal to having n
o feeling in her body from the collarbone down, paralyzed from the waist down, and struggling with incontinence. She was treated with high dose steroids and IVIG, as is customary. She came home in a wheelchair and very gradually regained the function she’d lost back to her baseline over the course of 4 weeks. She was seen by Neuro-Immunology Specialists who began working her up for a medication classified as an aggressive Disease-modifying-treatment (DMT). After a few weeks we learned she wasn’t a candidate for the first choice, so we moved on to the next. While undergoing testing to assess her candidacy for this second drug, she suffered another relapse in April 2022. We rushed to the hospital as soon as she started losing feeling in her body. It progresses SO fast. She immediately began steroids again, and they placed a dialysis catheter to start her on a plasma exchange, to remove the components of her blood that were attacking her. This effectively halted the progression, but there is never any guarantee that once symptoms start showing that they will ever reverse…and she is the same (maybe a bit worse) today as she was after discharge from that second hospital stay. She has no feeling from the collarbone to the upper thighs. She is not paralyzed but struggles with a wobbly gait and will still utilize a wheelchair for moderate distance. She suffers from vertigo and the room spins when she moves. She occasionally struggles with speech and forming words. She miraculously finished several classes for her Criminal Justice Degree this last semester but let others slide and is taking the summer off, afraid for the future. She works at a fast food restaurant and they have been so kind…but she is struggling to feel useful. When she works drive-through she angers customers because she keeps dropping their credit cards when she tries to hand them back. She is slow and constantly exhausted from her inner battles. She is sent home early from her 4-hour shifts, every time. She is, under no uncertain circumstances, miserable. To add insult to injury, her recent visit with a Neuro-Opthalmologist (to look for lesions on her optic nerve) determined she has bilateral cataracts, a risk of taking extremely high-dose steroids. She is TWENTY, you guys. So, what do we do? She was found to be a good candidate for the second DMT, and she started it a few days after discharge from the hospital in April. In clinical trials, 58% of people taking this drug had FEWER relapses than placebo. This drug is offering hope that it may be able to slow her relapse rate, but she can also only take it for 2 years. Many of the other DMTs have a similar story, and none of them offer any hope of improving current deficits. I’m not sure if I can express what it’s like to live in fear of another relapse starting and wondering if she will recover or stay there forever, but trust me, it’s awful. And if it’s awful for ME, I cannot imagine what runs through her head. So basically, “you will stay this way forever and HOPEFULLY you won’t get too much worse” is really the best we’ve got? If you were in her position, and you suffered a relapse, would you A. risk the steroids (and blindness) or B. accept the paralysis? It doesn’t matter because it all sucks. After immeasurable amounts of lost sleep and relentless pursuit of knowledge, we stumbled upon Hematopoietic Stem Cell Transplantation (HSCT). This is a treatment for MS that is first line in several other countries but is still in the clinical trial stages here in the US. It involves injections to stimulate stem cell production and their subsequent collection and storage, followed by intense chemotherapy to basically demolish the immune system. You then re-introduce the unaffected stem cells back into the body so they can start rebuilding an immune system – one that DOESN’T know how to attack itself anymore. HSCT offers a higher efficacy rating than any DMT (78% have positive outcomes), and it also offers the promise of regaining previously lost function. You come out of the treatment with the immune system of a newborn baby. She could be a "normal" person again for years, even a decade (or dare we hope, longer?), completely off DMTs. Maybe they will find that cure they're so close to catching while she's over here just enjoying "normalcy". There are a few options to gain access to treatment. You can enter into a clinical trial (and risk getting randomized to the control arm, no thank you). You can find a few specialized centers here in the US who primarily treat cancer patients and have strict qualifications for treatment. She meets all criteria except one – she has to fail a DMT first. So, we have to wait for the inevitable relapse that looms on the horizon, and then rush to hope we still have time to correct compiled deficits (again, no thank you). Or, you can travel out of the country and pay out of pocket. Which is exactly what we are planning to do. Our options (that don’t require DMT failure) are Russia and Mexico. So guess what, folks? I’m learning Spanish. Taylor is a great candidate for this treatment given her age, recent diagnosis, aggressive inflammation, and general health in every other body system. To me, it’s not really a choice. We are planning to leave for Clinica Ruiz in Puebla, Mexico on November 20, 2022. She will spend an intense ~28 days there. I am literally praying the DMT will do its job between now and November - that she falls in the 58% who "suffer less relapse". Please know this is an Internationally respected facility and not a back alley. They routinely treat MS patients here, having performed more than 3,000 HSCT procedures in the past several decades. This is all they do and after reviewing enumerate blogs, speaking to former patients, and discussing her case with them, I am confident in their capabilities to help Taylor. We will be launching a Go-Fund-Me, but have hopes of producing a variety of fundraising measures between now and then. We need to raise $67,000 and we are willing to put in the work. While I will be using every available resource to find a willing sponsor, I am brainstorming things we can do to generate funds that maybe you might have done anyway this summer even if it wasn’t attached to a cause. With that being said, if you have any experience with fundraising and have an idea that you think we could utilize, please feel free to message me. Keep in mind we also own an inflatable/party company – you want to dunk your boss in the dunk tank?? We got you. With a bouncy-house included. All for a good cause. Hope is, after all, everything we have. Thanks for listening if you made it this far. Gracias. Dios te bendiga. Please share away! Taylor’s Go-Fund-Me: https://gofund.me/0ee9d628
Clinica Ruiz website: https://www.hsctmexico.com/ms_landing.php...
HSCT warriors: https://www.hsctwarriors.org/
HSCT clincal trials: https://www.thelancet.com/.../PIIS0140-6736(16.../fulltext
UK MS Society statement on HSCT: https://www.mssociety.org.uk/.../disease-modifying.../hsct
Venmo: -Kolbe
In the event we knock this out of the park and overshoot our goal, we will donate any additionally collected funds to the United States National Multiple Sclerosis Society for use towards clinical trials on HSCT with a modest goal of assisting other Americans in obtaining treatment in their home country.
