Neil is such a light in our lives.
Now ten 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 surgery to open up the blood vessels and lower the risk of future strokes.
In Spring/Summer 2021 we are planning a major surgery to fix his hip dysplasia.
Since Neil was very young, we’ve hosted a (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 one-year anniversary of her passing.
Neil’s favorite activities include being on his outdoor wheelchair swing (see photo), having books read to him, watching his favorite TV shows, eating, and going for drives.
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. There is hope in research for Neil and other children who share his condition.
|WarnerMedia||$200.00||March 31, 2021|
|Todd Drew||$100.00||March 23, 2021|
|Mary Jane Hastings||$50.00||March 15, 2021|
|Erin Crooks||$100.00||March 01, 2021|
|Michelle Finnerty||$100.00||March 01, 2021|
|Lindsay Healy||$20.00||February 28, 2021|
|Jane Drew||$200.00||February 28, 2021|
|donald Palmer||$300.00||February 20, 2021|
|Debbie Morales||$100.00||February 18, 2021|
|Meredith Panik||$100.00||February 18, 2021|
|Susan Marshall||$150.00||February 11, 2021|
|Tom Riley||$50.00||February 10, 2021|
|David Petersen||$100.00||February 10, 2021|
|Sally Moses||$50.00||February 09, 2021|
|Jeffrey Serfass||$100.00||February 09, 2021|
|Trevor Kress||$200.00||February 09, 2021|
|ER Hunsberger||$100.00||February 09, 2021|
|Richard Kuszelewicz||$50.00||February 08, 2021|
|Kim Mclean||$20.00||February 08, 2021|
|Sarah Canberg||$50.00||February 08, 2021|
|Marilyn & Charles Roll||$100.00||February 07, 2021|
|Nicole Fayak||$50.00||February 07, 2021|
|Kimberly Perret||$100.00||February 07, 2021|
|Emily Smolenski||$50.00||February 07, 2021|
|Debra Drew||$100.00||February 07, 2021|
|Jeffrey Serfass||$100.00||February 07, 2021|
|Mary Jane Canose||$50.00||February 07, 2021|
|Jill Wiss||$100.00||February 07, 2021|
|Anonymous||$100.00||February 07, 2021|
|Gerald York||$100.00||February 07, 2021|
|Darcey Brooten||$25.00||February 06, 2021|
|Angela McQueen||$100.00||February 06, 2021|
|Catherine Martin||$100.00||February 06, 2021|
|Kristy Chmura||$25.00||February 06, 2021|
|David Williams||$20.00||February 06, 2021|
|Elizabeth Engelbert||$50.00||February 06, 2021|
|Robert Cull||$250.00||February 06, 2021|
|Ralph Petersen||$50.00||February 06, 2021|
|Linda Kress||$150.00||February 05, 2021|
|Margaret Hajjar||$200.00||February 05, 2021|