Eight years ago my rambunctious 2 year old was diagnosed with Neurofibromatosis Type 2. I wish it had been the first time we learned of it, but JT is actually the 5th person in our family to carry this devastating genetic disorder that causes tumors to grow on any nerve ending in the body. We have lost my Grandmother at age 42, my Uncle at just 27, and my own mother at 39 when Jt was a toddler. She loved him so very much...
JT was diagnosed when his eye doctor noted retinal hamartomas of both his eyes. The tumors leave him blind in one eye and impaired in the other. JT has been put to sleep for MRIs every 6 months since then to track his nervous system for any new tumors or growth. Last year we were told he is now developing the hallmark brain tumors of NF2 known as Vestibular Schwannoma. As these tumors grow they cause deafness, facial paralysis, and severe coordination difficulties which are often exacerbated by risky treatments that serve only to buy him time.
5 years ago JT and I got involved with the Children's Tumor Foundation. JT takes pride in training to run with the NF Endurance Team each October in Long Beach, and to date we have raised over $10,000 toward vital NF Research!
Now we want to ask our friends and family members to join us as we embark on a new fundraising opportunity for CTF with their Racing for Research program...
On April 20th JT will have the amazing opportunity to join GMG racing and the Pirelli World Racing Series at the Long Beach Grand Prixe to help raise awareness in his role as a NF Hero!!
JT is incredibly honored to participate, and we would both like to ask our family and friends to please take a moment to donate in his name to CTF in support of this amazing opportunity! Every dollar helps, and we thank you with all our love for your ongoing support in this battle!
Remember to never ever give up!
JT is super excited to serve as a Nf Hero at the Long Beach Grand Prixe with CTF's Racing for Research team! Please take a moment to visit his page, share, and donate if you can. It is the support of our community that is Fueling the Cure!
3 comments:
Wishing you the best! My daughter's friend has NF2. Hope the research turns up a cure soon!
Great pictures of JT! I remember meeting him a couple years ago in LV. He is a hero, and you are fabulous!
John
I agree with you, never give up. We are now very advanced and through the efforts of everyone, continuous research for NF2 is going to be fruitful. Be strong and be faithful.
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