Adventures with Ace - Life with Sanfilippo

09/07/2025

Memories are hard. They just show us what Sanfilippo has already taken away from him. 🥺

08/06/2025

Today is the last day to sign and potentially save lives in only 20 seconds.

The FDA delayed a gene therapy that could save children with Sanfilippo syndrome — a disease that steals children’s voices, mobility, and memories.

The science behind the drug is strong. But red tape is holding it back.

We’ve already lost time. We can’t afford to lose more.

Please sign the letter now. Add your voice to the 25,000+ who are urging the FDA to meet with families and review this treatment with urgency.

This is our final push for the letter. The deadline is tonight. Don’t wait.

Thank you to everyone who has already signed. You are incredible and showing the world how many people care about rare!

🔗 https://tinyurl.com/UNC-RareDis
Also linked in bio.

08/06/2025

They’re losing their voices.
The ability to walk.
The ability to eat by mouth.
And while Sanfilippo syndrome marches on, the FDA has delayed a promising treatment despite acknowledging the science is strong.

More than 21,000 people have signed our letter urging the FDA to act with urgency. But we only have until August 6 to show them how many people care.

Please sign the letter and share this post to tell the FDA our kids can’t wait.

https://tinyurl.com/UNC-RareDis
(Also linked in bio)

07/10/2025

We took a family outing to a small indoor waterpark about an hour and a half away. We had a great day! 💦 We’re always looking for places to take Asher that are a little more specific to his needs and this place delivered! It was clean, indoor (which means no sunscreen 🙌🏼), not crowded, and perfect for our Ace! Great job Salvation Army KROC Center…we will be back!

07/08/2025

On the Fourth of July we decided to take Asher bowling! 🎳 He had a great time!!

07/04/2025

After 6 weeks of therapy sessions, Asher finally got to ride Smokey!! 🤍🐴 He did great and rode for 10 minutes!! We are so proud of him!

06/13/2025

Doctor days can be nerve wracking, like Bottom of the 9th, bases loaded, and full-count nerve wracking, but not this one!! All smiles!!

04/16/2025

Tell me you love your sissy, without telling me you love your sissy!!

11/08/2024

“If you want to know how to treat a child with special needs, just look at their sibling. They will show you.” He LOVES his sissy!!

10/03/2024