My adorable two-year-old brother named Ace, has Rett syndrome. Maybe you have seen him around town in his wagon! He loves going to church and our field hockey, soccer, softball, and baseball games when the weather is nice. He cannot walk or talk yet but his smirk and side eye say everything. He is the strongest person I know. He has had many surgeries and hospital stays and does many therapies. He uses a g-tube to feed and the help of a ventilator to breathe. He also needs full-time nursing care.
Our family is so grateful for all the extra love and support our nurses, therapists, and our Scotch Plains/ Fanwood community continue to give us. There is no cure for Rett, but with technology changing daily, we know one is coming soon!!!
In Ace’s name, please learn about Rett Syndrome and consider donating to the Barrett D. Otis Charitable Fund. It is a fund our friend Barrett’s parents have created to help with research to cure Rett Syndrome specifically for Ace’s small group of boys that for many years have not been included in Rett research. Thank you!
https://www.bdofund.com
Arabella DeNigris 6th grader at Terrill Middle School Cadette to Troop 40907
