Christopher's Impact- $30 for 30

May 8, 1995 - Christopher came into this world a beautiful, vibrant baby boy. He left this world at 8 years old.

May 8, 2025, is Christopher's 30th Birthday!! I can hardly believe it!

Not a day goes by that I do not wonder what Chris would look and sound like. Would he be athletic, or prefer to sit quietly and read? Would he be married? Would he be a dad?? Would he have inherited my sense of humor?! Some days it is like yesterday, and others, it feels even longer than the 21 years he has been gone. Many of you knew Christopher, and many of you did not - but you all know me, and you know there will never be anything to fill that hole in my heart. Chris was a beautiful soul and made an impact on all who knew him, and even some who did not.

Batten Disease has not gone away. It continues to take the lives of many other beautiful children, and in many cases multiple siblings - unimaginable, even to me. While research continues to make small strides, there is something just as important to families of affected children:

SUPPORT

This is my plea - $30 for 30 - if you can spare $30, or whatever amount you feel you can afford, in honor of Christopher for his 30th birthday, it would mean the world to me. The fight is not over, and I will continue to advocate for the Batten Disease Support, Research, and Advocacy (BDSRA) Foundation because support is detrimental. I have created this Fam Fund in Christopher’s honor, with easy options for donating directly to BDSRA. Please feel free to share the link with others.

I am forever the mom of Melissa and Christopher, but I am also a bereaved parent, former President of the NY/NJ Chapter of BDSRA Foundation, and current volunteer host of bi-monthly grief chats for Batten parents. The grief begins at diagnosis as you watch your healthy child lose vision, mobility, motor skills, and speech while progressing to a feeding tube, dementia, seizures – and eventually death. Then raw, true grief hits. It is something that only another Batten parent understands. Even as I write this, grief rises to the surface to remind me that I too, still need support. Christopher’s 10th, 16th, and 26th birthdays fell on Mother’s Day. My chest tightens just writing that, and for me to openly admit the struggle is ongoing is not easy.

BDSRA is the only organization in the USA for families to turn to when they receive a diagnosis, and it connects them to others facing the same fate. Today, a small, full-time staff of 4 provide services to the newly diagnosed, bereaved, and siblings of affected kids. They also attend research and rare disease conferences, lobby in D.C, award grants for research, and coordinate the annual BDSRA Family Conference. With the explosion of social media and then covid, in person chapters are no longer active and as a result, much of the fundraising that helped support BDSRA in these endeavors has disappeared. Today, the sustainability of the BDSRA is in a very vulnerable position. Without an increase in fundraising, they are in danger of not existing and that would be devastating to families - and I do mean devastating.

Please consider donating for Christopher’s 30th birthday. Your donation means Christopher’s Impact will continue, helping other children and families who need support on this journey. And remember, as you make your donation, wish Chris a Happy, heavenly 30th Birthday.

$3,587.50

of $8,000.00 goal raised

Donate

	Thomas Cummins generously donated $103.00 154 days ago
	Jennifer Hankins generously donated $51.50 167 days ago
	Meg Doremus generously donated $50.00 177 days ago
	The Yacik Family generously donated $52.10 177 days ago
With love from the Yaciks!
	Nancy Avery generously donated $100.00 182 days ago
Remembering Christopher and his whole lovely family.
	Linda Mahnken generously donated $150.00 182 days ago
	Kristin Bachmann generously donated $30.00 182 days ago
	Kenneth Thomas generously donated $30.00 182 days ago
	Joseph Konen generously donated $300.00 186 days ago
In memory of Christopher and all the work his mother, Peggy, and all the other brave mothers do to help find a cure.
	Brian Lutz generously donated $51.50 190 days ago