James' story

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On Wednesday 8th April 2009 at 1:23pm my amazing miracle James Paul Myles arrived into the world, as soon as he was placed in my arms he was my life, no feeling could ever compare to that day.

When James was 2 years old he had several accidents that stopped him from walking, turns out he fractured his tibia each time, eventually he was diagnosed with Ollier's disease. My heart sank, I did not understand what this meant for my perfect child, information online was vague and scary. 

Ollier’s disease also known as enchondromatosis is a non-hereditary condition, it occurs in just 1 in 100,000 people. Enchondromas form close to the growth plates and usually in the tubular bones. Symptoms of the disease include pain, fractures and Slower limb growth and deformities, It is not a life threatening disease generally, but the tumours can become malignant at anytime, although even more rare than the disease itself. It is also a nasty disease that has no cure.

James is now 7 years old, he has had many breaks in his left leg. His leg is also shorter than his right leg. He has had so many x-rays, an MRI, a CT scan and in April 2014 he had his first operation. A bone graft on the front of his left tibia to strengthen the bone around the enchondromatosis as it was starting to grow out of the bone, and he was in pain daily. In June 2015 James went for his second operation this time his tibia was bowing, again he was in a lot of pain. He had a shard of bone attached to his growth plate slowing the growth of the back part of the tibia making the front bow. He had it removed and was completely brave throughout the entire operation, even got up and walked on it the very next day. He wears a splint everyday to prevent anymore fractures and also a shoe raise to help stop his limp and he is very confident with them.

None of this has ever stopped James from doing anything, he was walking as soon as he could after each break, he got up in front of his school to collect an award hopping with a frame a week after surgery. He got to experience his first bouncy castle, he competes in all his school sports days, and also does yoga with mummy, swimming lessons and karate. 

As he has gotten older he has slowly recognised he is different from other children, he can not jump as high as his friends or run as fast as them, this has taken it toll on his emotions and feels very down sometimes, and often told me he doesn’t want to live or doesn’t want to be in the real world, this is an strain on my emotions also and I try so hard to be the support he needs.

He visits a psychologist regularly and loves to sit and talk to her, I really believe she helps him manage his emotions but we still have dark day, I would do anything to go through it for him but he is so strong and so brave. He is my reason to live, he is my biggest inspiration, he is my superhero. 

If you have taken the time to read James’ story then thank you. There are so many people out there dealing with rare disease, taking the time to educate yourselves and each other about them means so much.