Garrett the Grand - Batten Fighter

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Garrett the Grand - Batten Fighter

This page has been set up to provide information about Garrett and his battle with a very rare genetic disorder called Batten Disease.

Unfortunately if you have made it to Garrett's page you have heard of the bad news. Garrett has been recently (in 2014) diagnosed with NCL (CLN1-infantile) or Batten Disease. This disease effects only 30 - 50 individuals a year in the United States and 2,000 worldwide. Within the next days, months and years Garrett will regress and will lose his speech, movement, cognitive abilities and have his life taken too early. He is currently losing vision, is almost blind and has many developmental delays. This disease will steal Garrett's body and mind but for us lucky enough to know Garrett we will always know who he is. If you see Garrett please recognize him and let him share some of the magic we receive daily. If you have questions, please ask, this is relatively therapeutic for us. Our goal is to educate and to have these rare diseases recognized. We need to get appropriate funding to end this unneeded pain for families. Keep an eye out we will be planning events which will be interesting and memorable. (This site is managed by me, Joe, I don't want Nancy to be blamed for my poor spelling and grammar).

04/27/2025

Happy #15 Garrett!!! 🎉🎉 You are an amazing boy, always rolling with the punches. 💛 #15

02/28/2025

Rare Disease Day 2025
🦓🖤🤍🖤🤍🦓

11/01/2024

Happy Halloween! 🎃🎃👻🐸

08/26/2024

Garrett is a high schooler!!! 9th grade ❤️

07/16/2024

2024 BDSRA conference in St. Louis, MO! So glad we could make the trip. Always a wonderful yet emotional time. Thanks to our donors so we could help sponsor this event 🦓

06/09/2024

International Batten Disease Day. We continue to fight and raise awareness for Batten disease while spending the best time together… family time 💛

04/27/2024

Happy Birthday Garrett!! This is 14! 🥳🎉You have overcome so much and continue to roll with the challenges. Love you forever and always 💛
#14

03/02/2024

Another amazing fundraiser at AR Workshop! Thank you to everyone who supported our cause 🖤🤍🫏🖤🤍

02/29/2024

Rare Disease Day 2024🖤🤍🫏🖤🤍
Garrett was too tired to take a pic 😴😂 He was so busy with his nurse handing out treats to everyone who wore stripes today!

12/23/2023

Wishing all our Batten Fighters a joyous and peaceful holiday season 💌
Love,
the Coyne family

10/31/2023

Happy Halloween!!!! 🎃
🏈⚾️🏀🏒

07/16/2023

BDSRA annual conference 2023! This year we had to split up because it was in Denton, TX 🤠 Joe and Palmer flew down for the in person event, while Garrett and I stayed home for the virtual. ✈️🏠
Garrett the Grand - Batten Fighter supported the childcare for affected Batten kids. The childcare is available so parents can get an opportunity to attend sessions while their kiddo is having fun and cared for!

Address

P. O. Box 2
Gilbertsville, PA
19525

Website

https://bdsrafoundation.org/

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