Noah’s Battle Against Batten

04/25/2025

Noah’s ready to swing into the weekend!

04/19/2025

We took Noah to check out the American Dream mall for spring break. This place has just about everything you can imagine. We attempted the watwrpark and learned it was a bit too overwhelming for Noah but he enjoyed shopping at the many different stores, visiting Tous R Us, riding the swings in the amusement park, and playing games in the arcade. We never know what is going to be a “win” for
Noah but we always try new things to keep life interesting! Noah loved having the deep fried hot dog and a very delicious breakfast at this great pancake house we found with fancy chocolate milk!

04/01/2025

04/01/2025

Noah finding a beeping Easter egg

04/01/2025

This past Sunday, the Churchville Lions Club of Maryland hosted an Easter egg hunt for children with visual impairments in partnership with HCPS special education department.

Noah had so much fun finding the special beeping Easter eggs and I was so impressed to see how creative they were to create a fun, inclusive hunt for children with varying abilities and levels of vision. Noah is still talking about the fun he had on Sunday!

01/30/2025

Noah has been at The NIH Clinical Center this week participating in his natural history study for batten disease. A natural history study follows a patient over the course of their life with an annual visit and a top to bottom physical assessment of all of his faculties.

This assessment helps doctors learn about the progression of this disease and sheds insights as they work towards a cure or treatment.

Noah has worked so hard this week and we will wrap up tomorrow. Today will be his most challenging day as he undergoes anesthesia for a lumbar puncture, MRI, and vision assessment.

We have been exploring Bethesda and visiting some of our favorite spots to reward Noah’s hard work at the end of the day.

Our Batten kids are so brave and we are so thankful for the very important work done at NIH. Programs like this study give families affected by Batten a reason to hope for the future. We hope to save our children and improve the quality of their lives and we hope that one day there will be an end to children and their families receiving this earth shattering diagnosis.

Please remember we depend on programs like this to learn about the unknown and find answers to improve quality of life. We must support research for a better future for our children❤️

12/30/2024

This is Noah’s absolute favorite place to shop. Lunar Squirrel's Puntique at Harford mall. The owner Josh is so friendly and is always talking to Noah about his products and giving demos of items. The thing I love most about Josh’s store is that many of his products have one opened for kids to try out. This is an amazing accessibility feature for kids like Noah that can understand what the toy might be inside the packaging of a box. Next time you want to reward your kiddo with a small treat please consider this small veteran owned business. Josh carries a variety of nostalgic toys and candy, fidget toys, musical instruments and lots of “worlds smallest toys”and more. There is something for everyone’s price point!

So skip the dollar tree and 5 Below and show small business like this all the love!

Josh- thank you for always making Noah feel so welcome in your store and answering ALL of his questions!

07/02/2024

07/01/2024

Noah celebrated his 11th birthday on Friday. We have had a busy week visiting family in NC and Noah had a blast spending time at the beach, visiting with his great Aunt Karen, playing games at the arcade and driving a go-kart! What a week of fun we all had! Here are a few pics from his birthday week!

07/01/2024

Here is the video of Noah's first pitch at the O's game on Saturday June 15th. Thank you Baltimore Orioles for an amazing experience for Noah!