It’s been two years since Blair was taken from me by Sanfilippo Syndrome. And I’m not letting that happen to others like us. I want to see this disease stopped.
Every dollar you donate goes towards research for treatments and, hopefully a cure, for the disease that stole Blair. I hope you might help me reach my goal.
MY LIFE WITH BLAIR
My name is Henry, and I met the love of my life when I was just a puppy.
Blair was a young girl when her parents added me to the family. Bright eyed and dark haired, just like me, we bonded instantly. A romping puppy and busy little girl, we were the perfect playmates. And we did everything together, playing on the beach, having adventures in the yard, and lots of snuggling. Never far from each other. Ours was a love like that.
But things changed for Blair over time. She was born with Sanfilippo Syndrome, and as she grew up, the disease’s effects started. She stopped being able to talk to me, to feed me, to walk me, to throw sticks for me, and eventually even pet me. But that was okay, she was still mine.
I’d always been protective of her, but now she needed me like never before. I could still share my love with her, standing guard over her, laying with her, and calming her during seizures. I never left her side, even when doctors and nurses would come to her bedside. Because I sensed our time together was short.
On that final morning, I laid with my Blair for the last time, heartsick that it was time for her to let go. We surrounded her with love as the morning sun shone in, and I looked into her beautiful eyes as she took her last breath.
We spent a lifetime in those short years. But it wasn’t enough. It was cut short by Sanfilippo Syndrome.
Let’s stop Sanfilippo from parting any other kids and their pets.
Please share our love story and donate.
Thank you for honoring my love, devotion, and hope for the future. I sure miss my Blair.
ABOUT MY FAMILY
It’s been two years since we were left navigating a future without our Blair. We will never forget the love and light she brought into our lives, and we will never stop fighting for a cure.
Our family is a practiced hand at fundraisers. Blair’s parents, Roger and Susan, raised funds for research throughout Blair’s life and have continued doing so. All while working full-time jobs.
And it’s a family business. Blair’s sister Grey gives new meaning to “sisterly love.” Not only does she host an annual purple-lemonade fundraiser, but she also created The B.L.A.I.R. Connection , a sibling-support website for brothers and sisters of terminally-ill children. I know Blair would be so proud of her. I certainly am.
This GoFundMe campaign is just my part of our family’s fight to spare others this devastation. To create a new fate for children with Sanfilippo and their families.
And I’m also showing my new playmate & protege Hudson, the fundraising ropes and, like the pup he is, he’s eagerly joining in.
ABOUT SANFILIPPO SYNDROME
Imagine Alzheimer’s but in children. That’s Sanfilippo Syndrome (also known as MPSIII), in a nutshell. It’s the worst disease you’ve never heard of.
Sanfilippo Syndrome children, like Blair, are born with a change in their DNA that causes their bodies to be unable to breakdown natural cellular waste like everyone else. Instead, their bodies slowly become clogged with toxic levels of it, which especially affects the brain.
The effects start at birth, yet aren’t obvious until 2-6 years of age. It begins with speech problems, developmental delays, challenging behaviors, extreme hyperactivity, and poor sleep. And because Sanfilippo is a rare disease, it often is misdiagnosed as Autism for years.
As the toxins build up in the children’s bodies, the cellular damage progresses, causing Alzheimer’s-like dementia. They lose the ability to speak, to walk, to feed themselves, and then they die in their early teens.
Today, there is no cure. But there is hope. And hope is turning into action. There is more scientific research happening than ever before to find a cure. And it feels closer than ever.
With the help of funding like I’m raising here, clinical trials are happening for Sanfilippo in gene therapy, enzyme replacement, and research in many other areas to give children a chance at life. A chance I wish Blair could have received. But much more research is needed to truly cure Sanfilippo.
Any donation will go towards funding more research and clinical trials for a cure.
While I lost my special someone too soon, we can keep tomorrow’s Blair and Henry together.
ABOUT THE CURE SANFILIPPO FOUNDATION
Every dollar goes to Cure Sanfilippo Foundation, a 501(c)(3) nonprofit organization, whose mission is to advocate for and fund research for a cure and treatment options for Sanfilippo Syndrome.
The Foundation was created by fellow Sanfilippo parents in 2013 after their daughter was diagnosed. In a short amount of time, Cure Sanfilippo has made significant strides – generating more than $7.25 million through grassroots and viral fundraising, funding 20 research projects, some leading to clinical trials to save children's lives. They provide support and information to Sanfilippo families internationally which has created a network of 65+ families electing to fundraise under their umbrella, elevating awareness among the medical community and general public through presentations and national press, and more.
Cure Sanfilippo is powered by families. Its success is because of Sanfilippo families like mine, who choose to fundraise and advocate to help end this disease. Ultimately, it’s up to us to drive and fund the research for treatments and a cure because large pharmaceutical companies have little interest in rare diseases with small patient populations.
If you would like to donate by check, please make the check out to: Cure Sanfilippo Foundation. In memo, write “For Henry and Blair,” and send to:
Cure Sanfilippo Foundation PO Box 6901 Columbia, SC 29260