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LoveQuiltsUK - Mya H's quilt

Mya H's quilt    (Quilt currently being assembled)

Born:2019
Illness: Osteogenesis imperfecta type 4

Theme: Fairies

Quilt currently being assembled
Photo of Mya H

Theme details

Fairies - Backfilled quilt



Biography

My 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/?



Patterns


1.Stitcher: Nicola, St Albans, UK
Received

2.Stitcher: Jenny, Rushden, UK
Received

3.Stitcher: Jenny, Rushden, UK
Received

4.Stitcher: Seren Senior, Derby, UK
Received

5.Stitcher: Seren Senior, Derby, UK
Received

6.Stitcher: Julie Edgcumbe, Haverhill, Suffolk, UK
Received

7.Stitcher: Elaina, Sutton Coldfield, England
Received

8.Stitcher: Elaina, Sutton Coldfield, England
Received

9.Stitcher: Nicola, Elland, UK
Received

10.Stitcher: Emma Swift, Aberdeen, UK
Received

11.Stitcher: Jodie Balaam, Lawshall, England
Received



Squares received

Cross stitch square for Mya H's quilt
Stitched by: Nicola
Submitted: Jun 2020

Cross stitch square for Mya H's quilt
Stitched by: Jenny
Submitted: Jun 2020

Cross stitch square for Mya H's quilt
Stitched by: Jenny
Submitted: Jun 2020

Cross stitch square for Mya H's quilt
Stitched by: Seren Senior
Submitted: Jun 2020

Cross stitch square for Mya H's quilt
Stitched by: Seren Senior
Submitted: Jun 2020

Cross stitch square for Mya H's quilt
Stitched by: Julie Edgcumbe
Submitted: Jun 2020

Cross stitch square for Mya H's quilt
Stitched by: Elaina
Submitted: Jul 2020

Cross stitch square for Mya H's quilt
Stitched by: Elaina
Submitted: Jul 2020

Cross stitch square for Mya H's quilt
Stitched by: Nicola
Submitted: Jul 2020

Cross stitch square for Mya H's quilt
Stitched by: Emma Swift
Submitted: Jul 2020

Cross stitch square for Mya H's quilt
Stitched by: Jodie Balaam
Submitted: Jul 2020

Cross stitch square for Mya H's quilt
Stitched by: test
Submitted: Jul 2020


Card

Card for Mya H
Stitched by: Kaz Bowen

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