Support with 10 Dollars of love for Jakob

My son Jakob Kamil Guziak, who was born on August 8, 2019 and was diagnosed with SCID (Severe Combined Immune Deficiency) also known as the “bubble boy syndrome”; the type of SCID that Jakob has is called ADA (Adenosine deaminase) deficiency. In absence of this enzyme, the body builds toxic proteins damaging the brain, lungs, hearing and kidneys. This is a very rare genetic disorder  that in most cases could be fatal in the first years of life, if left untreated.  These babies cannot fight any type of infection, including a regular cold unless they are provided with an immune reconstituting treatment such as Gene Therapy. 

In order to keep Jakob’s vital organs working, Jakob’s is currently receiving treatment with Revcovi, which is a very specialized medication in form of an injection. Jakob´s doses requirements of Revcovi are twice per week. This is an extremely expensive medication; the cost of each dose is estimated at CAD $12,000 per injection. Fortunately, we have been approved by the Government of Canada to receive one year worth of this treatment, however, Jakob won’t be able to survive without Revcovi or until he gets a permanent cure.  Also recently exams have show that Jakob’s thymus is not working properly giving him a prognosis of 6 months to 1 year, news that come with much sorrow to us, leaving us with no other choice but to work very hard to get these funds on our own. We are still pushing for Government actions and more permanent solutions in the upcoming months, but is clear that we can’t wait any longer. He is facing a race against time.  In Jakob’s case, bone marrow transplant would be the last option to be taken because Jakob does not have a matching sibling donor or unrelated donor, leaving Gene Therapy as the gold standard cure that has no threat of rejection or GVHD since the process uses the patient’s own stem cells.  

So forget about the price, what is the value of this treatment? Jakob has been fighting this battle for 15 months now, a battle that has cost a little more than $1.248.000, and that is a big number. Denying how ready we are and the possibility of saving these children leaves us with a gap, and here patients die, Jakob could die and that idea of burying my own child having an existing cure out there is unbearable.  Until October 30th 2020, Milan, Italy  was approved by the European Medicine Agency (EMA), and only place to get this Gene Therapy for ADA SCID at an approximate high cost of 1.5 million dollars.  Unfortunately, the treatment has been put on hold due to an ongoing investigation about a patient  and a leukemia case, please feel free to search in this link Orchard Therapeutics press realease

On the other hand, we are optimistics that Preposition 14 (5.5 bilion dollars budget for steam cell reseach) would pass in California, perhaps opening a new door to save Jakob through a clinical trial conducted there.  Meanwhile free trials in the United States and London are now closed, so this is not an option. In order to save him, we need to count with you; every dollar helps, but most important, we need to be ready to explore any possible and safe option to give him a life chance.  If you share it and others can help in your behalf then Jakob is closer to get a cure that will impact and transform his life.  We desperatly need your support, because this battle is to big to fight it alone.  Jakob needs you... Are we ready to save him together?

If Jakob´s funds are not used, we would donate them to another SCID child or to the SCID  Anges for Life Foundation to keep helping many more SCID children.  For more information about Jakob's condition you can go to Facebook,Instagram and Twitter, search and follow Jakob, little fighter.

All funds will be deposited into my personal savings account and will be used for Jakob´s curative treatment and ongoing care.52048916_1603310449434620_r.jpegJakob little fighter blog


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