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LoveQuiltsUK - Shaira S's quilt

Shaira S's quilt   (Quilt Coming Soon)

Born:November 2011
Illness: Prader Willi Syndrome Hypermobility Hypertonia Global Delay Learning Disability Non Verbal

Theme: Rabbits

Quilt will open soon, keep checking back!
Photo of Shaira S

Child Interests

Shaira loves a - z picture cards Mr Tumble her Black Rabbit Lambs Cooking fake kitchen and loves her tea set Favourite colours pink yellow bright colours


Shaira was born in November 2011 she was the older twin we didn’t know anything was wrong during pregnancy and it was a huge shock to find she was in intensive care straight from birth and they didn’t know what was wrong. Tests eventually after 56 days from birth confirmed she had Prader Willi Syndrome when we brought her home she was fed through a feeding tube as it was discovered she had a unsafe swallow. Eventually through patient and syringing small quantities of milk we managed to get her to take a bottle, many professional worked with her SALT Portage Play Physio but she still didn’t take independent steps till she was 5 years old. She still cannot walk very far without needing the wheelchair, and todate at 7 years old we still have no words very very hard having a non verbal child also a daily reminder in her twin sister where she should be in her development. Shaira has been under many teams gastro respiratory Eyes Hips Endo Spinal so Hospital Clinics has become the normal for us, but she never complains and also has had a daily growth hormone injection since the age of 14 months. She still uses nappies day and night and she shows little interest in potty training. Shaira older brother is also Disabled with ASD and I suffered a heart attack last year a huge shock. Nobody knows the strain and stress disabled children bring to a family and the adaption and sacrifices that are made. Despite that Shaira is a much loved member of the family and it’s so hard that because of the PWS she has to miss out on so many treats as her diet has to be kept so healthy and that she is supervised around food or food waste. We haven’t as yet had to secure food under lock and key but are ready for when we need to.

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