What is Osteogenesis Imperfecta?
Mya has Osteogenesis Imperfecta (OI), and developed fractures when she was still in the womb. Some know the condition by the term, brittle bone disease, however, it is so much more than this. OI affects the digestive, cardiovascular and respiratory system. It can impact heavily on teeth, skin, and ligaments, and can cause fatigue and secondary conditions. It can cause deafness, and affects mobility and ability to join in on things we all take for granted.
Unfortunately it is also incurable
She is fragile and will fracture very easily. Unfortunately OI affects one in 20,000 people, so it is very rare. This also makes it unknown to most people.
We need to educate
We cannot control this condition but we can create positivity and celebrate the strengths of these individuals. The significance is also about education and raising awareness.
Often families are torn apart due to this rare condition
All over the world, there are children like Mya, who feel socially excluded and misunderstood. There are unfortunately cases of false child abuse allegations, heartache, and families torn apart.
All children deserve to be held and cherished
There is so much fear of these children, as people are afraid to accidentally break them. Some know them as ‘children of glass’, and some offer unhelpful labels which only offers to exclude them further.
She is just a little girl
I simply know Mya as my beautiful baby girl, who lights up the room with her smile and infectious giggle.
Our children are more than a diagnosis
These children are the same as every other child. They deserve to be loved, to have friends, to have fun, and to live their best lives. Although OI is incurable, these children still deserve every opportunity and to enjoy life.
Mya will always be simply Mya
I am so proud of my girl and she will only ever be defined by her own achievements and her amazing resilience.
Awareness is the key
The only way to change the world is to educate it, and shout as loud as possible to spread the much needed awareness.