Meet the McNeil Family

Meet the McNeil Family

Thursday, April 24, 2014

Go Fund Me - Saving Eliza

I wanted to share an opportunity to help families who have children with Sanfilippo Syndrome fund gene therapy research. For years, families have been raising money to fund research - hosting lemonade stands, golf tournaments, 5k runs, galas, t-shirt sales. All of the hard work has paid off and we are on the cusp of gene therapy clinical trials moving forward at Nationwide Children's Hospital. They are currently running a Natural History Study for Sanfilippo and they hope to begin clinical trials within the next year or so. It will be a very small sample size, first for safety and efficacy. The hope is, if successful, there will be an effective treatment for Sanfilippo Syndrome.

A newly diagnosed family created the video above to raise awareness and money to help pay for the clinical trials. They have already raised over $500,000 in about 2 weeks. They have a goal of $1,000,000. Please consider donating to the Go Fund Me site: No amount is too small. And please share the video via social media.


Wednesday, April 16, 2014

Always Ride the Carousel

We visited one of our favorite local parks this past weekend. It is a playground completely designed for children with special needs and disabilities. We were there for a birthday party. After lunch and cake, we had to take ride on the carousel. Oliver chose a horse and Wavey, who was connected to her feeding pump, rode while in her wheelchair. Little things that bring big smiles.

Monday, April 14, 2014

Big Sister & Little Brother

These two.

I have been thinking so much about these two. About how Sanfilippo affects them. I tend to focus on how my life has been impacted, forgetting this is actually happening to them.

Waverly is doing well. Her little joints are continuing to stiffen. Each morning we stretch her arms and legs, careful not to just jostle her out of bed. Patience. Her little feet shuffle and her joints creak. She has trouble maneuvering and just wants to plant her feet firmly on the ground to feel secure. When she walks her knees are beginning to lock - a sign that she is feeling unsteady and doing whatever is in her power to stay upright. I wonder how much pain she is in, knowing her pain tolerance is significantly higher than mine.

Oliver is still moving. His little feet are turning in a bit more and he isn't quite as fast as he used to be. His biggest change is confusion. When he goes out the front door he doesn't walk over to the van anymore. He wanders the front yard, until we call him over. He is forgetting his routine and requires a lot more help to keep him on task.

Typically they parallel play - each in their own world next to one another. I have found them to be closer lately. In a matter of minutes Oliver left his love seat and climbed up (and almost over) Waverly. He loves to put his feet on those he loves, so this was a gesture of adoration for his big sis. Except for the pain of getting kicked and the weight of his legs on her, I know she loves being close with her little brother.

Go Nats!!!!

We took the kids to see the Nationals play opening weekend. It was a fantastic game with a big win. Baseball games have become a very fun activity for our family and we hope to take in a bunch more games this season.

Wednesday, April 2, 2014

PJ Party in the Moon Bounce

Waverly & Oliver were at Jill's House last week for a school night overnight. They sent me this picture of the kids in pjs for a quick moon bounce before bed. I think it is utterly adorable. (I especially love when they braid Wavey's hair.) We are so grateful to have Jill's House.