Brad and I formed this Foundation because of our four-year-old daughter, Kirby, the disease she was afflicted with, and the hope that Sanfilippo and its devastating progression could not possibly manifest itself within her — our beautiful bundle of joy. The solution seemed simple. Raise funds to enable researchers to advance and expand their work to find a cure. We chose to fight this disease.
Now 16 years later, although Sanfilippo has taken its toll on Kirby, she continues to defy her affliction with seemingly endless resolve, all the time with a smile. A smile that brings us reassurance of her comfort and delight in her moments of happiness — a reminder of her amazing grace. She is our hero.
As her battle continues, our dream of a cure could come true, for Brad and I have received news of a breakthrough this year. Dr. Haiyan Fu of The Center for Gene Therapy at The Research Institute at Nationwide Children’s Hospital in Columbus, Ohio, is ready to bring her 10-year-old gene therapy program to human clinical trial. Joining forces with other families and foundations, we hope to raise $1 million to fund the studies required by the FDA to bring her work to fruition.
The price to fund this and continue to support other valuable research might seem insurmountable. But all Brad and I have to do is remember what doctors first told us 16 years ago: Nothing can be done. Enjoy her while you have her. Then our thoughts turn to Kirby. Her fortitude must not be in vain. No matter what the future holds for her, our mission is still for her. Because it is her story that is repeated in hundreds of families around the world, hundreds of stories shaped by one cure. And it has been your faithful belief in our mission that has allowed Kirby’s story to be written and your unwavering support of The Foundation that has helped research to reach this level. It can be done.
We ask that you think of Kirby, and in her honor, continue to support The Children’s Medical Research Foundation and its mission of a cure.
With gratitude,
Sue and Brad Wilson
