I recently met a mom at the playground where my son goes to preschool. We quickly bonded over our close-in-age toddlers, but as we continued to talk, I learned that this family was more than average. Following is her story about her oldest son, Jack. I hope you'll help me spread the word about this worthy cause and help her sweet little boy raise money to find this much-needed cure.
The Boy
Jack Burke is a kind, energetic, inquisitive, adorable seven-year-old who loves life and his community here in Milton, Georgia. He attends Cogburn Woods Elementary, swims for the Crooked Creek Crocodiles, has played ball with the Hopewell Youth Association, and is a big fan of music and even public speaking. He is a fantastic big brother, makes his parents so proud every day, and is blessed to be loved and cherished by many. Jack also has Neurofibromatosis (“NF”), and his story is one about triumph, resiliency, community support, advocacy, friendship and love.
The Diagnosis – Tumors without a Cure.
NF is a genetic disorder causing tumors to grow on nerves anywhere in the body, including the brain and spinal cord. It can lead to blindness, deafness, chronic pain, disfigurement, learning disabilities, bone defects, cardiovascular problems, cancer, and a wide range of other complications. Occurring in 1 out of every 3,000 births, NF is more prevalent than cystic fibrosis, inherited muscular dystrophy, Huntington’s disease, and Tay Sachs COMBINED. It affects people of all ethnicities, and half of all cases arise in families with no history of the disorder. Anyone’s next child could be born with NF. While NF is one of the most common neurogenetic diseases affecting adults and children, few, if any have heard about it. Indeed we, like many others, had not heard about NF until our little boy was diagnosed.
Our Journey and Mission – Jack Leads the Way
When we were first told that Jack had NF, we did the requisite research, leaving us terrified and devastated. While our beautiful toddler peacefully slept in his crib, we read what we could possibly expect: Tumors. Deformities. Learning disabilities. Cancer. Vision and hearing loss. Pain. Death. No cure. No effective treatment. Not our baby. Not our Jack. We felt hopeless and helpless, until we realized that the one thing we can control about NF is our decision to do our part to find a cure. This decision led us to our partnership with Children’s Tumor Foundation (CTF), a national nonprofit 501(c)(3) foundation and recipient of a four-star rating from Charity Navigator, whose mission is to support NF awareness and research as well as the development of treatments and a cure for NF. Little did we know that it would be our son who would lead the way and provide inspiration for us all.
Jack currently has a plexiform neurofibroma (a more complex tumor) in his left eye orbit, and is being closely monitored for changes in his optic nerves and certain areas of his brain. He has had numerous MRIs, surgery, and countless tests and visits to the doctors to monitor the growth of potential tumors in his body. Jack works hard every day to become stronger. Others affected by NF – in Georgia and elsewhere – unfortunately have had even a harder road to pave than Jack. Like others living with NF, we do not know what the future will bring for Jack.
We do know, however, that Jack is dedicated to “fighting tumors,” and is not shy about talking about it! Among other ambitions, he wants to be a scientist that cures NF. He is able to tell others that he has a tumor on his eye, has explained to his kindergarten class that he needed eye surgery, and that he is raising money so that doctors can help him and all the other kids who have NF.
The Event - What You Can Do To Help
This year, CureNFwithJack will be sponsoring its Inaugural Fore NF Golf Classic benefitting the Children’s Tumor Foundation. The golf tournament will be held on Monday, April 16, 2012 at the Alpharetta Athletic Club in Milton, Georgia. Our goal is to have 120 golfers take to the links to raise at least $25,000 in support of this amazing cause. It will be a great opportunity to provide support to Children’s Tumor Foundation through a fun-filled day of golf with colleagues and friends. The event will feature various contests, raffles, an auction, lunch, and an afternoon reception.
There are currently over 50 items available for raffle or auction, including several sports memorabilia items such as an autographed Matt Ryan Falcons jersey, an autographed 1980 Team USA Jim Craig hockey jersey, a Dale Earnhardt, Jr. signed diecast car, and more. Local celebrities will also be in attendance. We hope to see many people on the links!
For more information and to register, click here.
Through the support of many generous individuals, Jack raised over $15,000 for the Children’s Tumor Foundation in the latter half of 2010 (and helped hold the first NF Symposium at CHOA), and was proud to announce recently at a banquet of 230 people that he has raised another $11,000 this past year. Jack has raised this money through the assistance of fantastic members of our local community, including an amateur golfer who raised $4,000 for CTF through the American Junior Golf Association, and a 13-year-old girl who joined her friends on her birthday to raise almost $2000 at their garage sale. Our funds go toward the Children's Tumor Foundation Racing for Research program, which culminates in Daytona’s Rolex 24. This program raised over a million dollars last year, and keeps growing. Jack and other kids affected by NF are invited to attend, meet the professional drivers (one of which is a Dacula, Ga resident), sign the car and cheer the team on toward victory! See a clip of Jack’s Daytona experience last year.
Jack has plans for a higher goal this year, and wants everyone to know about his upcoming golf tournament where “he will be the most famous person there.” With some help from others, Jack also has designed his own logo and website, www.curenfwithjack, to enable people to learn about NF, find out about local NF events, and discover how other individuals from this area have helped Jack find a cure for NF.
