MYA’S STORY

I remember when we were told about Mya’s abnormal scan in the pregnancy. I remember being told her legs measured differently, they were both too short, and her bones looked bent.

I remember the anxiety and the trepidation. The unknown. The lack of control.

I remember being told she had broken bones at 25 weeks of gestation. I cried.

Then I questioned. Did I break her? Was she in pain? Was she suffering? Would she break again? Would she be ok?

When Mya was diagnosed with osteogenesis imperfecta type four at birth, I cried again.

This time I cried with relief as the burden of anxiety I carried could be dropped. We now had the diagnosis and our story could begin. I haven’t cried about the diagnosis since. Mya is more than her osteogenesis imperfecta. Mya is worth more than every single tear and every slice of discomfort and anxious thought. Mya is 21 months old now and we have to be very careful with our fragile princess, but she is such a happy girl. She has bone infusions at the children’s hospital every 12 weeks and has an amazing care team around her.

My main thesis is that although she is born different, this will simply make her stronger and more resilient. No, we did not ask for osteogenesis imperfecta, but Mya is the best little girl we could ever have asked for. I am so proud of her and her resilience. There is a highlighted need to raise awareness and educate people in what it is and what it is not. I honestly believe that to change the world, first we need to change each other.

RAISING AWARENESS

I began a page to show Mya’s journey and to also include significant content to provide awareness and knowledge of osteogenesis imperfecta. I believe that the more awareness is spread, the better known this condition can become. This can reduce social exclusion, stigma, perceived limitations, negative ideations, and promote hope.

I have had many expectant parents and fellow parents reaching out to me and I hope to continue to support and gain support through my page. As osteogenesis imperfecta affects one in 20,000 people, it remains rare and misunderstood. These children are amazing with the resilience and strength of warriors. If I can do a tiny bit to help with raising much needed awareness for rare diseases, then I am happy. Mya is the happiest and sweetest little girl, and her future will include surgeries, regular treatments, fractures, and a high likelihood of a wheelchair. However, she can be educated, follow her chosen career path, marry and have a family. She can follow her dreams. She is only physically different.

TO LEARN MORE ABOUT PEOPLE LIVING WITH RARE CONDITIONS, WATCH THE UK’S OFFICIAL RARE DISEASE DAY VIDEO. IF YOU WOULD LIKE SHARE YOUR OWN EXPERIENCES, PLEASE EMAIL [email protected].

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