Most of you know me but for those who do not my name is Sandra Katzin. I am a single mom raising my 2 wonderful boys in PA. Mitchell is 19 and in his 2nd year of college and then my HERO Ethan 14 who received a diagnosis of Duchenne's Muscular Dystrophy which is a fatal muscle wasting disease.
The last thing I was expecting was to raise my children myself and on one income let alone have a child with a disease that will rob him of so many quality things in life (a few ex: write, feed themselves, breath, smile, rollover) and worst of all shorten his life expectancy. Ethan was diagnosed at 6 years of age. I was told his body is unable to produce a protein called dystrophin that all of us need to heal muscle tissue breakdown which occurs in everyone. It mainly affects boys. Natural history shows they lose their mobility around 12 and life expectancy is normally in their 20's but we've seen younger and older. NO ONE KNOWS!
Ethan could never run, skip, or ride a bike. He received a power chair in 3rd grade to help him get around in school easier. He couldn't have recess and gym in the same day since it caused too much damage resulting in blood in his urine. At the end of school he was mentally and physically exhausted. We believe he began his end stage of mobility around 12 as more muscle weakness was noticed since I now had to get a stairlift since he could no longer climb our stairs at home. My son became depressed especially with seeing others his age playing competitive sports which he wasn't able to do. The only option to help was steroids to help keep the strength of his muscles.
In 2015 when he was 12 we were given the opportunity to participate in a clinical research trial. He pleaded with me to allow him to try out because he wanted to help find a cure so his friends would stop dying. It was a huge committment but a no brainer. He met all the criteria and he gets weekly infusions in a port that is in his chest, every 12 weeks travels to Kennedy Krieger Research for two days of testing and two trips to Columbus Ohio for a deep tissue muscle biopsy from each bicep. We traveled to the FDA meeting in DC and spoke of the benefits and this last September the drug now called EXONDYS51 was approved for commercial use. Ethan and the other boys helped make history since we now have the very 1st treatment designed just for DMD. He has become a wonderful advocate for himself and the Duchenne's Community. He is my warrior and a HERO. His objective was to help his friends.
Yes I am grateful he is still walking but the drug is only meant to slow down the progression, it is not a cure. Everything involved has taken a toll on my family emotionally, physically and most of all financially. I am so proud of Ethan. He smiles more and is less depressed. He loves to go to his events as a goodwill ambassador and the only way I can continue to do this for him is by purchasing a handicap accessible van. His scooter that I purchased for him to use because I don't have the ability to transport his power chair is getting harder to lift in and out of my car due to my ownn health issues and it isn't as comfortable for him as his power chair. Also with my college son being home on summer breaks he has to work to help with the expenses of college and the stress of my full time job schedule, Ethan's events, doctors appt's for 11 specialists and Mitchell's work hours doesn't work out and is almost impossible to do with one vehicle.
This is where I tell you the fabulous news! There are so many things needed that insurance doesn't cover and the cost is so high. We are honored that the Jett Foundation has chosen our family to participate in their gift giving fund. The purpose of this fund to help Duchenne's families with expenses that insurance doesn't cover. They will match the amount that I can raise through generous donations (please know that I also am giving what I can afford) and then they will purchase the van for us that we desperately need. I found a used one in great condition with less miles so it is practically brand new. Older ones have high miles and alot of undercarrige rust which is dangerous to use and wont pass inspection as I found out with the 98 I had gifted to me 3 years ago which also had 195,000 miles on it. I completely appreciated it and am still grateful but I'm without now and can't afford one that will last on my own. I wanted to be realistic and not set our goal so high that it is unreachable. I need to raise $15,000.00 which is our half and the goal we must meet in order to make Ethan's dream come true. I know I am expecting alot from my friends, family and people that I don't even know but I have learned that it's okay to accept help. It is for Ethan's sake. I owe it to him and he deserves it!
Thank you for visiting my fundraising page!
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.
Don't forget to forward this to anyone who you think might want to donate too! Thank you for your love and support. We are eternally grateful and will never forget it.
Sandy, Mitchell and last but not least Ethan Pyles. xxxxxx
If other resources have already been used to meet a specific need, if there is no longer a specific need, and/or if donations have been received in excess of a specific need, donations made in furtherance of a specific need will be applied for general purposes of the Jett Giving Fund. If the Jett Giving Fund no longer exists, all donations will be applied to further the general charitable mission of the Jett Foundation