As others have said I'm sad that you had to get TM but am very glad you found
us. Hayley's story is so similar to mine only I got TM at the age of 12
years. I was also a gymnast. I am now 31 years old and have spent the last
19 years with many ups and downs. My level originally was C6-7. I had
difficulty breathing from the moment TM hit. Thankfully I never needed a
respirator but was mighty close. I cannot push my wheelchair at length
because I lose my breath easy. While I was pregnant with my son I was given a
full respiratory exam. They found I had about 75% of a normal persons lung
capacity. In my 8th month I had a very tough time breathing so, Jesse was
born a month early. Back in High School I decided to push myself up a steep
ramp and collapsed a lung.
I, just as Hayley, developed scoliosis about 2 years into having TM. They
tried the bracing thing till I eventually had 3 full spinal fusions. My first
fusion was when I was 15. Are the doctors saying she would need to have a
full spinal fusion? Before my fusion I had a lot of back pain, fortunately
the fusion took away the pain completely!!
As far as depression, 12 years old is so tough but add a disability to it and
feels impossible. I have an extremely supportive family. Basically the
friends I had before TM were not my friends after TM. My brothers and sisters
were my friends. I kept myself busy drawing, listening to music, and seeing
movies. I did start sit snow skiing in High School. Lots of fun. Let her
know life does go on. She should plan on having as normal of a life as any
other person. I' have my college degree (work as a tax accountant), have been
married for 11 years, have a 5 year old son, sit waterski as often as
possible, ride a handpowered bike, and surround myself with positive people.
Attitude is everything. I could let myself quit if I thought about it but
life is so short and wonderful, I'm not about to let it pass on by!
Please try to get her on-line I'd love to talk to her directly.
Take Care!!
Paula