Wednesday, December 11, 2013

Meet Timmy - My Ironman Hero

A couple of weeks ago, I shared part of the reason why I am participating in Ironman Florida 2014 in this post. However, that was only part of the story. I’m taking on a challenge with the Children’s Tumor Foundation by partnering with the NF Endurance Team. Neurofibromatosis (NF) causes tumors to grow on nerves throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain. NF is under-recognized and under diagnosed.  The Children’s Tumor Foundation funds critical research to find treatments for NF.
As part of my partnership with the NF Endurance team, I have the had the privilege to meet Timmy, a child who is living with NF and who has become both my inspiration and my Ironman hero.

I want to share with you a little bit of Timmy's story through an email that I received from his mom:

"Timmy is 4 years old. He was diagnosed with Neurofibromatosis (NF1) when he was a couple months old. Timmy had his first MRI (which is done under general anesthesia) when he turned a year old. He was also diagnosed with scoliosis when he was a year old. Shortly after he turned two, Timmy was diagnosed with an optic glioma (brain tumor that grows from within the optic nerve). The tumor went from non-existent to completely filling the space between his orbit and brain within a year. He lost almost all vision in his left eye. Timmy had a broviac (central line used for chemotherapy) surgically placed in his chest and immediately started chemotherapy. Timmy went through a year and a half of weekly chemo to treat the optic glioma. During this time, we found out that he had another tumor developing in his right eye. Timmy also had to start wearing a patch (over his right eye) four hours a day (to try to force his left eye to work and regain some vision). He will continue to wear a patch for a few more years.

In the midst of his chemo to treat his optic gliomas, Timmy's scoliosis went from mild to severe. He was fitted with a scoliosis brace and wears it 23 hours a day. Correcting his scoliosis will be a process. He will have to have major surgery to place rods to straighten his spine. This surgery will be followed by more surgery every 6 months, to lengthen the rods, until he is fully grown. When he is fully grown, his spine will have to be fused to prevent his spine from returning to it's curved state. He continues to wear his brace in order to (hopefully) put off surgery for a few more years. He goes to physical therapy (and does daily exercises) to help him develop better balance and coordination.

During the past year, Timmy developed a new tumor in his brain stem and some smaller bright spots in his brain. The neurosurgeons are carefully monitoring these areas through quarterly MRIs. Timmy has had 12 MRIs so far. Timmy also went through spinal cord surgery in October of this year to release his tethered spinal cord. Sometimes it feels like we are constantly at the doctors office or the hospital for something. Timmy is pretty tired of going under anesthesia. NF does not run in our family. Timmy just ended up being one of the 40% of cases that spontaneously develop.

Despite everything Timmy has been through, he continues to be an enthusiastic, sweet and funny little man.  He thinks life is great!  He loves to talk to people and makes friends with people everywhere we go. I feel so lucky to have him as my kid. NF has been overwhelming to say the least, but seeing all The Children's Tumor Foundation does and the new research that is developing keeps us hopeful.  Thank you again for choosing to race for the NF Endurance Team.  You are making a difference!"

Does that face and his story not just totally melt your heart?!? I have been through some hard stuff in my life but nothing even close to what Timmy has had to endure and I definitely didn't do it with a good attitude and a smile on my face! Real talk! I realize that this post is getting long so I am not going to add anything more than a simple request that you consider donating to The Children's Tumor Foundation and my Ironman journey. My personal fundraising webpage can be found here. If you have any questions or would like additional information please feel free to contact me via the comments section or on Facebook.

1 comment:

  1. We are called to count our blessings and help others...see you shortly