We are your typical family.
3 boys, 1 girl, 3 dogs, a few fish and a couple of turtles.
I still recall that fateful day July 14, 2014, when Sky was diagnosed with NF2. We were playing dress up in the playroom, and I saw her stumble a bit, I chalked it up to excitement. As the day went on I noticed her leg shaking when she was standing.
I asked her if she was feeling sick, or if she was in pain, she smiled and said, “no mommy, now it’s your turn to catch me”.
As I laid in bed that night, I could not stop wondering why her leg was shaking. I told my husband about it, and like every other parent, we started searching the web for answers.
The next morning, Sky had a doctor’s appointment for a basic check-up, I told the Doctor what I noticed, and he conducted a CT scan….that’s when he said those mournful words, “your daughter has neurofibromatosis type 2”.
We started looking for answers to WHO gave this to her? WHAT is NF2? WHERE does it affect her? WHEN did this happen? WHY did this happen?
We did genetic testing and it was not passed down by my husband, and I.
It was a spontaneous mutation, and NF2 produced 6 tumors on her spine, 2 vestibular schwannomas, one at the apex of her lung, and in her ears.
Here we are now, a year into it, and we have been able to get a biologist to work with us and pour through medical records pertaining to NF2, going back a decade.
We have sent out hundreds of emails across the country to researchers, doctors, scientists, and pharmaceutical companies, looking for a cure to this rare disease.
We gained some attention by the HISTORY channel, and their show COUNTING CARS. The crew showcased our daughter’s battle with NF2. They modified a car for us, and we are auctioning it off to raise funds for the fight and search for the cure.