Sarah Jane's interview
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How did all start?
James had an accident on a slide with his grandad, he did no walk for a day or 2, at 2 years old that concerned me so took him to the hospital, we were sent home and told it’s soft tissue damage as he was too young to break his bone as it was too soft. Couple months later he ran across the living room and as he jumped on the sofa his foot got stuck under the sofa, again he did not walk, again we were sent home from the hospital with ‘soft tissue damage. Couple more months later janes stood on the stairs, his ankle gave way and he fell backwards down the stairs. Again back to the hospital and sent back home with ‘soft tissue damage’. As we arrived home I called my mum and explained what had happened and that I was going to go to London’s children’s hospital as there has to be something wrong. This is not normal for a 2 year old. I hung up the phone and instantly received and call, it was a doctor at the hospital, he walked through A&E to collect something, and see james’ x-ray, and told us we need to attend A&E again to have a cast out on as James had a small fracture through what presented as a tumour in his tibia. We were then referred to the orthopaedic centre.
Do you already have a diagnosis? How long did it take you to get it?
James was dioagnosed in 2011 with olliers disease, it took about a year and a half from first accident to official diagnosis.
For what medical specialties have you been treated? What has been the most useful specialty for your?
X-ray used every check up, the orthopaedic specialist every 6 months. Orthopaedic phsycology which helps James’s to understand why he has it and how to manage it.
What has been the most useful thing for you so far?
I found Facebook groups for support, as it’s so rare I never expected to meet other people in similar situations. I have attended a conference and met other parents of children with the disease as well as adults who have had it the entire life.
What have been your biggest difficulties?
The emotional effects it has on James, watching him miss out on things like trampoline parties, and swimming with his friends. He did karate for a bit but his operations put him behind and he became disheartened as others we progressing quicker than him.
How has your social and family environment reacted? Have your social or family relationships changed?
We have had incredible support from my parents, they are very close with James, and my mum comes to all james’ operations for support. The school are more reluctant to let him join in some activities, but we work closely together to ensure he is included. My old job helped raise money for research.
What things have you stopped doing?
James isn’t as active as he was when he was younger, partly to do with him being autistic as well but he worries he may hurt his leg if he does too much. He has had many fractures caused but running around and falling.
What do you think about the future?
I think he can grow to lead a normal life, so I don’t worry too much. I hope he comes to terms with the disease and can work his life around it so he doesn’t miss out
What would you like to do if you didn’t have your condition?
I think James would have more confidence to try new things
If you had to describe your life in a sentence, what would it be?
Difficult and challenging but rewarding and fun
Finally, what advice would you give to a person in a similar situation?
Seek support, being so rare you can feel really isolated, but there is so much support from social media support groups to the orthopaedic psychology. Conferences around the world where others with the disease attend, these are a great opptunity to remind you that you’re not alone
