| Evan is 8 years old. He was diagnosed with NF1 when he was 3 months old. We have been though may struggles throughout the years, but nothing compares to what has been going on in the last couple of months.
Over the last couple of months we have been trying to deal with problems with his right shoulder. It all started on Mother's Day. My husband & the kids were playing Wii. After an hour or so, Evan said that his shoulder is hurting. We didn't think anything of it, we just thought that he pulled a muscle or something. A few days later we recieved a call from the school nurse, she said that Evan was in OT doing some exercises when he cringed in pain. We immediately went to pick him up and took him to the ER, they did x-rays & told us that nothing was wrong. We noticed that he still was acting werid & was hurting so we took him to his pediatrician who told us that his joints looked like they were wearing down. We were so confused. Evan is only 8 years old, he can't be having joint problems. They scheduled an MRI on Friday, June 26th. What the MRI showed was that Evan has a very large tumor about the mass size of a cantaloupe in his right shoulder. It is so big that it is close to his lungs and is wrapped around a major artery, the vertebral artery, it sends blood to his spine. Evan's shoulder is 100% dislocated. He has no shoulder socket holding arm in place. We went to Children's Hospital in Philadelphia where they told us that Evan should live with this problem as long as he can, cause surgery will leave him with no use of his arm.
Evan has been in alot of pain lately. It's become an everyday thing. It hurts to see him in pain & that there is nothing we can do to make it go away.
We fundraise to find a cure.
The Children's Tumor Foundation funds NF research & supports the improvement of health and well being of individuals and families affected by NF. |
