BiographyMy daughter Mya was diagnosed with Osteogenesis Imperfecta (OI) in utero. She is now 14 months old and a type 4 moderate.
We found out at our 20 week scan that she had bent femurs, and there was uncertainty of the severity of her presentation. We were told that at the time her survival was also questioned. Emotion after emotion, our journey began.
Mya was born via Caesarean section, on 13th May, at 37 weeks. She arrived in the world screaming and healthy. She had a full skeletal assessment and was officially diagnosed as a type IV. Mya was referred to the metabolic bone team at Sheffield Specialist Hospital and began biphosphonate treatment a few weeks later.
My main thesis is that although she is born different, this will simply make her stronger and more resilient.
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.
I began a page to show Mya’s journey and to also include significant content to provide awareness and knowledge of OI. I believe that the more this 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.
I have also made a video to support people in changing OI babies nappies, and my 12 yr old son narrated an animation designed by my husband, to raise awareness on a child level
Mya has pamidronate bone infusions every 3 months and will need these for life. This helps to reduce fractures and also serves as a pain relief as she becomes sweaty and distressed when her treatment is due. She is expected to need a wheelchair for distance and when lethargic as OI affects the organs, which also affects energy levels and ability. She truly inspires me every day with her strength and resilience.
As OI affects 1 in 20,000 people, it remains rare and misunderstood. These children are amazing with the resilience and strength of warriors.
The recent news coverage of the little Australian boy with dwarfism is close to my heart and highlights further the sheer importance of teaching our children about diversity and kindness.
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.
My page is:
Osteogenesis imperfecta- Cushioned in Love
?https://www.facebook.com/oursnowflake/?
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