My niece was diagnosed with Gorham's disease when she was 9-years old. Although she fought the disease relentlessly, she only lived three years past her diagnosis.

I would watch her as she lie in her little hospital bed and have to hold back the tears. Her tiny neck had to be supported with a neck brace for the bones there were not strong enough to hold her head up. She had one request which was met from the Make A Wish Foundation. This request was to meet Usher. Usher did come and visit her in the hospital and she was lit up with joy. She admired Usher and always wanted to meet him. He made her dreams come true for a day. She wanted to go to the prom someday. Her mother knew that she would never be able to go, therefore she bought her a dress, and put it on her in her bed and took pictures. This was the last moment that I remember of her being happy and seemingly full of life.

It was painful to watch such a young girl with many hopes and dreams pass away at such a young age. She was very beautiful and had dreams of being a singer and a dancer. This post is to inform others of this rare disease.

Gorham's Disease is a rare bone disease. There have only been 200 cases ever reported. This Disease is marked by bone loss that can be in one joint or spread to the tissue and other bones attached to the joint causing muscle atrophy. The disease has been reported in people from age 1 to age 75. The first case of Gorham's disease was reported in 1838.

Gorham's disease can be triggered by some kind of trauma. In the case of my niece, her's was triggered when she was in a small car accident. In the accident she fractured the bone, thus allowing the disease to take shape and grow through her body. Once the person has a injury, the bone can't heal again.

Gorham's Disease can form on any part of the human skeleton. However, the most common places are the skull, shoulder, rib cage and mandible.

When the disease first starts the patient may be asymptomatic or could present symptoms such as localized swelling, pain, or pathological fracture. The disease can stabilize, go into remission or be fatal. Most of the time, the patient does not ever fully recover.

Gorham's disease is treated in a palliative manner. This means that you do the best you can to keep the patient as comfortable as possible because there is no known cure. Any type of medications used currently are just to control pain because there is not enough known about the disease to treat it yet.

My heart goes out to any family faced by this horrible disease as I have been through it with a loved one myself. I hope that more research will be done and a cure will soon de discovered for Gorham's Disease.