As a family, we are raising money through Help Hope Live. Help Hope Live is a non-profit organization that allows donors to make a tax-deductible contribution towards medical bills for Ryan’s cause. The organization writes a check directly to the hospital if/when we raise enough money. : )
Ryan was diagnosed with Relapsing Remitting Multiple Sclerosis (MS) in January of 2016. Since that point, he has had multiple relapses, and I have had to watch Ryan rapidly lose bits of him-self. He has been told this his MS is aggressively progressing.
There is some hope though! There is a trial being conducted through Northwestern University’s Feinberg School of Medicine “Division of Immunotherapy and Autoimmune Diseases,” also through Northwestern Memorial Hospital (Chicago, IL). This trial uses a procedure that has been done at Northwestern, and other facilities globally, for a number of years. Called HSCT, Ryan will go through a long process over about a months time in and out of Northwestern, where they use his own stem cells as a part of the process of re-booting his immune system. Past trials have shown 80-90% success of halting the progression of MS! Ryan was accepted to be a part of the trial, though the hospital, and physicians that have been conducting the trial, have been doing so without any pharmaceutical company help. The hospital does the procedure at the lowest cost that they can possibly do it at, for people that don’t have insurance/can’t get approval.
Ryan’s insurance is not accepted through the hospital, so we are attempting to fundraise for the procedure, with costs of $125,000. There will be other costs (hotel, airfare, etc.) but Ryan and I think that we can save enough to be able to cover these expenses.
This trial is only being conducted on persons with active disease/inflammation on MRI’s, as well as a confirmation that the MS sufferer is still in the Relapsing Remitting form of the disease. This is due to past trials having shown that the procedure is most successful on these patients. This gives Ryan one-year’s time from his most recent Relapse (January 2018) to have this procedure done, to help to make sure that he is still in this stage of disease.
If Ryan misses this one-year window, he would have to wait until another relapse (one that could cause more disability/overall symptoms added to what he already deals with- with the likelihood of not fully recovering), or if he has progressed to the next stage of the disease (and not have another relapse), he would not be able to have this procedure done.
Most people that have known Ryan for years, that see him on a daily basis, can tell how much he has been affected by this disease, but since this disease is considered a “snowflake disease” that no two people suffer the same symptoms/disability progression, we will try to explain some of these symptoms, and what he has to deal with on a daily basis. It’s difficult to see that a person deals with this much, most of the time, because they are predominantly internal symptoms, though some of his disability is becoming more noticeable.
Ryan daily has many issues with his sight, he has partial vision loss in his right eye (optic neuritis), but at times this has been severe, near blindness in both eyes. He also deals with other vision related issues, some constant, and some intermittent: Shaky vision, inability to focus on objects, double vision, flashing lights (it is a real possibility of blindness, for a person with MS). He also constantly deals with tightness/pain in his limbs, as well as his stomach, called the “MS hug.” He has had balance/walking difficulties, and the more he progresses, the more likely it will be that he will have to use a walking-aid in the future (cane, wheelchair, etc.). He also suffers from numbness/tingling in his limbs, constant muscle spasms, difficulty swallowing, fatigue, and memory/cognitive issues, among other difficult to deal with symptoms.
Some family members were with Ryan in Chicago, and are also a part of Facebook groups with him, of which we have met/corresponded to many people with some amazing results and stories from having this done! The Facebook group that is specific to the trial in Chicago has over 9,000 members! This doesn’t include any of the many other facilities. One lady that we met in Chicago was in a wheelchair prior to having HSCT, and was walking into her one-year follow up appointment! This is one example of some of the amazing results. Although many times the procedure halts the disease progression, there have been instances of disability improvement! (We would be happy with stopping progression, but returning some pieces that Ryan has lost would be an amazing bonus!!!)
We have included a few links that will help to further explain the procedure. The first link is Dr. Burt recently (April, 2018) speaking at The Vatican about the successes these trials have had, and how they can transform treatment for MS. I was trying to keep this as short as possible, but it is a lot to take in and fully understand. We have been researching for over a year to be able to get to this point.
Any contribution means the world, and I hope we can help to give Ryan his life back!!!
May 6, 2018
❤️ Stay strong Ryan
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Help Hope Live
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In honor of Ryan S Soucie
Help Hope Live
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