Since starting this blog 5 years ago, it has been amazing to see how a little real estate on the internet can make connections. I can honestly say that the result of the poor grammar and mindless words I write on the web have been some of the best friendships I have ever had. Knowing your hearts, I thought I would send this opportunity to give to my great friend Matt. We met through this blog and he’s a partner in the journey with me. I can’t say enough about his friendship. Please see his email below:
We are writing to tell you about an event in which we are participating on August 6th. The goal is to raise money for the Children’s Tumor Foundation. Kendall is the 10 month old daughter of our good friends, Matt and Stephanie Reeve. Kendall was diagnosed with Neurofibromatosis (NF) at 2 months of age. NF is a genetic disorder in which the nerve tissue grows tumors. The tumors can grow quite large and impact other nerves, organs and tissues.
In her young life, Kendall has had a particularly tough time fighting the disorder and has been confronted with numerous complications (Kendall’s story). It is rare with NF, but Kendall had a large tumor in her abdomen that was cancerous. In attempt to shrink Kendall’s tumors, she underwent several rounds of chemotherapy. Unfortunately, the chemo was unsuccessful, and she had a complicated surgery in order to remove the tumor, which was intertwined with her bladder. Her bladder was not able to be saved. We all take for granted that having a bladder is quite important to our daily lives. While she can live without a bladder, it is not a preferred way to go through life. She can no longer be submerged in water, which makes normal bathing and swimming impossible.
There is not a cure for NF . . . yet. Kendall has multiple tumors in her spine and on her legs that will likely need surgery in the future, possibly additional chemo, as well.
Because the disorder is not in and of itself cancer, it lacks the funding that is provided for cancer research. The Children’s Tumor Foundation is the primary fundraiser for NF. Guys, if you watched the NBA draft lottery this year, you saw Dan Gilbert’s son, Nick bring some luck to the franchise. He is an ambassador for the Children’s Tumor Foundation (link to his story).
We are not people who would normally solicit donations, but this is a cause to which we have committed ourselves. We have seen what NF can do to a beautiful baby girl and the toll it has taken on her family. We are hoping that you join us in making a donation to the Children’s Tumor Foundation by sponsoring us in the Run/Walk that will take place in Carmel on August 6. We would love to have you join us in the walk, too. A link to our site is below. While we don’t want to pressure anyone to give, spreading the word seems like the least we can do to help out our friends. A donation would mean a lot to us and certainly to those having to deal with NF on a daily basis.
Matt and Candi