Brad and I formed this Foundation because of our four-year-old daughter, Kirby, the disease she was afflicted with, and our hope that Sanfilippo and its devastating progression would not 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 24 years later, although Sanfilippo has taken its toll on Kirby, she continues to defy her affliction with seemingly endless resolve and still an occasional smile for us to cherish. 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 at Nationwide Children’s Hospital in Columbus, OH. Drs. Haiyan Fu and Douglas McCarty from Nationwide’s Center for Gene Therapy, along with physicians from the Children’s Hospital, are ready to bring Drs. Fu and McCarty’s 19-year-old gene therapy program to human clinical trial. Joining forces with other families and foundations, we hope to raise the necessary funds to bring their work to fruition.
The price to fund these studies 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 24 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.
Kimberly Fowler was a very special girl who touched the lives of so many people. She taught us the importance of patience, compassion and most of all unconditional love. She made us focus on all the beautiful things that the Lord has provided. We took nothing for granted. The most important things in life to us were not our material possessions. It was family.
The best days for the Fowlers were the days Kimmie Fowler smiled. And when Kim smiled it was almost always because of the love and care given to her by Jeff and Betsy. Like Kimmie, they truly are a gift from heaven.
Life is good.
More importantly, Kim helped us to truly appreciate the many blessings that the Lord has bestowed upon us and strengthened our belief in Jesus Christ as our Lord and Savior which leads to everlasting life.
Today, we say goodbye to Kimmie – but only for a short time. Betsy, Jeff and I truly look forward to the day when we will meet our smiling healthy little girl in the Kingdom of Heaven.
As I conclude today, my wish is that everyone realizes how short of time we have here on this earth. Appreciate each day. Be happy, be positive and don’t hold grudges. Hug your spouse, hug your kids, appreciate your friends and tell everyone that you love them.
Life is a gift.
Harder to realize, but more important, is that our time on this earth is but a blink of an eye of our eternal life. The famous verse John 3:16 tells us “For God so loved the world that he gave his one and only Son, that whoever believes in him will not perish but will have eternal life.”
My prayer today is that all of us will accept Jesus Christ as our Lord Savior.
Someday, Kimmie Fowler wants to see all of us in heaven.
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” – Margaret Mead
I first heard this quote at a United Way event, and I thought it spoke clearly to our fundraising efforts. We are truly grateful for the thoughtful and committed who remain strong in our lives. I thank each of you who continue to donate on behalf of Rhianna. Many of you have been supporting our efforts since the beginning over 14 years ago. As I speak of longevity, words cannot express our appreciation for the dedication of Sue and Brad Wilson. Their hard work has now brought us a promising breakthrough to a cure. As they continue to care for Kirby each day, they have remarkably found the energy to kick it up, set a goal and make this breakthrough a reality. May they be blessed with ongoing strength and courage.
I must not forget that within our small group are the researchers, many of whom have dedicated their lifelong careers to finding a cure. Without them, change would not be possible. To each of them, my heartfelt gratitude and all of Rhianna’s very special smiles.
