Welcome to wheeler's warriors!
Battling Batten and Finding a Cure
CLN3, often called juvenile Batten disease, is an ultra-rare, fatal, inherited disorder that primarily affects the nervous system. Children with CLN3 disease develop normally until ages 4–6 years, when progressive vision loss becomes noticeable. Shortly thereafter, parents report personality changes and behavioral issues. Typically, within 2–3 years after symptom onset, total vision loss occurs, and seizures begin. This is followed by declining speech and the progressive loss of motor coordination. Eventually, children become wheelchair-bound, bed-ridden, and die in their late teens to late twenties. Psychosis, hallucinations and/or dementia can appear anytime during the disease.
Wheeler was born on May 1, 2019 at a healthy 9lbs 6oz and 20 3/4in long, AND he was THREE weeks early. Needless to say, he was born a happy and healthy baby, and is still. He is full of life and energy. Wheeler loves playing, being outside, traveling, eating, and being with his loved ones. At almost two years old, Wheeler is showcasing his strength and determination in every way. He enjoys his gymnastics and swimming classes, loves to walk his puppies, and climbs and jumps on everything possible. Most of all, Wheeler is sweet, kind, and has a heart of gold.
1. Pray - we firmly believe prayer can move mountains
2. Follow us on social: Facebook: @wheelerswarrior Instagram: @wheelerswarriors Twitter: @wheelerswarrior
for updates and become one of #WheelersWarriors
3. Contribute- Our friends have started a GoFundMe for Wheeler. The money raised will go directly to a Special Needs Trust for Wheeler and will be invested to cover future medical and quality of life expenses. *NOT tax-deductible*
4. Donate- we have established a family fund under Beyond Batten, a 501C3 committed to raising funds and awareness for research and treatments for CLN3. *Tax-deductible*
5. Share this post with your networks and communities.