Neil remains such a light in our lives.
Now eleven years old, Neil was diagnosed with MECP2 Duplication Syndrome when he was less than a year old. His extremely low muscle tone affects his life greatly, and makes each day a challenge. He’s also unable to walk, so transporting him is becoming increasingly challenging. The most recent dilemma is finding a way to control his seizures without losing his sweet, happy, and inquisitive personality.
After having a stroke just before he turned 3, Neil was also diagnosed with a disorder called Moyamoya disease, which constricts the blood vessels near his brain. Shortly after the stroke, he had a successful brain surgery to open up the blood vessels and lower the risk of future strokes.
In May 2021 Neil finally had his much needed hip surgery and although a tough recovery he stayed brave and strong!
Since Neil was very young, we’ve hosted an (almost) yearly fundraiser in our local community. It’s been amazing to receive all the loving support from so many people who want to support Neil and kids like him.
Neil’s Nana was his #1 fundraising fan. Her deep interest in furthering research of MECP2 was paired with her desire to tell her friends and neighbors about this cause she was so passionate about. Nana passed away in early 2020, and we’d like to honor her by conducting this campaign during the two-year anniversary of her passing.
Neil’s favorite activities include having books read to him, watching his favorite TV shows, eating, going for highway drives, listening to his music, swinging and being with his family.
Neil keeps a joyful spirit about him and takes true pleasure in the little things… and so teaches us as his family to do the same. He keeps fighting, and so we will keep fighting with him. Thank you so much for making this important donation towards helping some amazing children and their families who remain hopeful with this research, and in honor of an amazing Nana who is dearly missed everyday.
|E. Russell & Mary Hunsberger||$200.00||May 03, 2022|
|WarnerMedia||$50.00||March 31, 2022|
|DEBRA DREW||$50.00||February 28, 2022|
|Trevor & Theresa Kress||$50.00||February 21, 2022|
|Irene Brownlie||$0.00||February 17, 2022|
|Marie1 Schiavo||$25.00||February 17, 2022|
|Pamela White||$50.00||February 17, 2022|
|linda kress||$150.00||February 12, 2022|
|Kate Kurelja||$25.00||February 11, 2022|
|Meggie 💙 Hajjar||$50.00||February 11, 2022|