He is having continued pain and numbness in his leg which has moved in just the past couple of weeks to his arm and neck. Unfortunately the disease is degenerative and incurable. Brett has been forced to use his wheelchair more frequently, has been exhausted incoherent and in pain frequently. We are trying to get him to the Mitochondrial Disease Symposium at the end of the month in Washington D.C. Our hope is to make connections with the top experts in the field. Plane tickets alone will be more than $900 that we dont have. Our financial situation is always a strain with weekly medical and travel costs . Unfortunately his health requirements limit my availability to keep up with work which impacts our income. Everything we can do to learn about clinical trials and other options to ease Bretts pain, extend his life and the quality of it is our number one priority. We may need some help making this happen.
Brett has battled a believed Mitochondrial disease since he was six days old. We've nearly lost him 4 times. He has had more than 30 medical procedures and so many hospitalizations we could not count them all, some for months at a time. His life consists of weekly trips to Children's Mercy over an hour away where he sees multiple specialists to manage his health when he is "healthy". His medical regimine would make most 80 year olds feel lucky. Although Brett has overcome so many of the odds his entire life these past two years have presented a decline. A few months ago Brett began to have even more severe GI and bowel disfunction, started spiking temperatures, throwing up (through his fundoplication), passing out for even 12 hours at a time during the day, collapsing and becoming incoherent periodically. It was the pain and numbness in his hip/leg that began to alert his doctor that something different may be happening. He said, "14 year olds just DO NOT have hip pain". Unfortunately searching for the answers to major problems often brings you the news you would rather not hear. This was just another in the long list throughout his life.
Brett was unable to walk until he was 3 years old with a walker. Before that he couldn't even sit up on his own. He went nearly 3 years without eating or drinking by mouth, even longer on thickened liquids. He has been through so much already seizures, weight loss, bullying, spending birthdatys and hollidays in the hospital at Childrens Mercy. Brett has always come through it all, our Superman. Knowing now that the simple things that he fought so hard to gain in his life are going to slowly disappear is truly heartbreaking. Our goal is to do anything we can to change this or make it better as his battle continues.
This is the only fundraiser we currently have time to hold before D.C. Although it's never been our choice to ask others for help, fighting for Brett has been our life and we want the fight to continue! We are so Blessed!!!
Thank you and God Bless!!!
- Shawn Smith
- Raul Rodriguez
- Sue Schmaling
- Sara Buckland
- Tye & Amber Cooley
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