Kyle was first diagnosed with NF1 in February of 2009. We took him to the eye doctor because we thought he had a lazy eye. But when the doctor dilated and looked in his eye he noticed swelling, pressure, and hemorrhaging at the optical nerve. Within days we were at Phoenix Children's Hospital getting CT Scans, MRIs, and meeting with a ton of specialists. It was found that Kyle had a optical glioma or tumor on his right optical nerve that was causing him to be blind in one eye. Kyle thankfully ended up being diagnosed with NF1 with no further tests because of family history (his dad has it), his tumor, and his café au lait spots.

By the middle of March we were in surgery getting a port placed in his chest and he started receiving chemo April 5th 2009. He was on a 13 month treatment plan scheduled to go until May 2010. Our first MRI showed the tumor was stable but the swelling had gone down and his eye was able to go back in his socket, we were so grateful. The next MRI showed that it shrunk slightly. We took Kyle out for pizza and games. The last few MRIs have shown that the tumor is stable. The doctors are happy, but as you can imagine, as parents, we had hoped for some more shrinking.

Kyle did fairly well on treatments and didn't usually get sick. We have been in the ER countless times and spent almost a week in the hospital due to an allergice reaction to his chemo. His hair thinned a little but he never lost it all. He had his off days and nights but overall, he has remained a happy, social, and outgoing little boy. He is so smart and charming. He just cracks us up sometimes and gives us a good laugh when we get too serious. He is the light of our lives and we can't imagine life without him.

We had a follow up with the ophthalmologist on January 20th, 2010. The doctor was very nice and sympathetic as he broke the news that Kyle's vision in his right eye will not be coming back. His vision is 20/800 and there has been no change since last year.

This has been a trying time, but we have continued to be lifted up by loved ones and some truly amazing strangers. We really appreciate all those that have rallied behind us.

Since chemo treatments have finished we continue to have MRI's, eye exams and appointments with his oncologist and geneticist every 3 months to monitor his vision and the tumor.

We now also put our efforts into raising Kyle to be a well adjusted child and raising awareness of NF and for Children's Tumor Foundation. There is currently no cure for NF, won't you help us find one? No amount is too small. It could be your donation that funds the research which would lead to a cure. Through CTF's research efforts, we are hopeful that in Kyle's lifetime we will find a cure. We pray that no more future generation have to suffer through having NF.

Thank you for your kindness and generosity as we continue on Kyle's journey and see where he takes us!

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