all the reconstructive surgeries made life possible
James' bravery throughout from diagnosis when he was 2 to today. He keeps me strong.
My son Sebastian.
My son was diagnosed with Olliers at 6...more info learned from the group than from the doctors.
Built up shoes
i actually have maffucci's syndrome which is another subtype of enchondromatosis
Finding the Facebook support group really helped bring my son's disease into perspective. All the specialists we had been seeing couldn't provide reasonable expectations of the prognosis.
18 legthening surger
Will be preparing for surgery soon to install an 8 plate on the tibia.
my mum and dad being there and helping me
Synthetic bone replacement surgery at Cedars Sinai in Los Angeles
I have always had an awesome support system with friends and family.
Staying strong, having the right doctor, my children
Having my beautiful husband support every thing I do.
Taking one day at a time. No need to worry about risks that are more likely not to happen than to happen.
My family being there all the way
Leg lengthening with Illizarov frame
My family
Optimismo seguí un consejo... vivir el hoy
my daughter, Jasmin, she's the reason I go on strong and accept and face adversity.
The support myself and James have received from family and friends.
The Olliers disease support group is great because Support is always there when needed... No matter what time of day or night.
'I can do it' attitude
i was actually born, raised, and lived in CA, USA until 2012
Getting my son into the Shriner's hospital in St. Louis has really helped. He has an upper and lower extremity specialist that have both dealt with Ollier's in the past.
build up of my shoes
Full body bone scan to detect if any other parts of my body are effected.
My Mom by my bed when waking from surgeries. My medication, my friends
Finding support groups on social media and travelling to the UK to meet some others
Educating myself and finding information from support groups.
Mr Ali at Manchester Children Hospital
Femur and knee replacement
Gabapentin, helps with pain. without it, I wouldnt have been able to reach heights.
The Facebook support groups, I was a rut, feeling helpless and finding the Facebook groups changed my outlook completely, helped me to continue being strong for James
Essential oils and relaxation techniques
Facebook page is great... Constantly updated.
i have lived in ireland for about 4 years
Time has made all the difference. My son was diagnosed at 3 months old. I was afraid he wouldn't be able to walk, but he's nearly 2 and runs around like any other toddler.
having lots of support and love from family
Most importantly I stay positive and try not to let stress or worry about things in life bring me down as I feel when I am stressed my tunors grow.
Knowing I am no longer alone with this disease
Learning more via the internet about my condition.
Staying in the moment with my sweet son so I don’t miss the good stuff!
My husband
Texas Scottish Rite Hospital for Children