Shifa T's quilt    (Quilt Completed)

Thank you

We would like to thank you for the quilt we all love it so much and Shifa has already started using it! It was such a thoughtful gesture and the designs/patterns used were so appropriate for Shifa! The personalised touch was a lovely added bonus.

Finished photos

Individual squares

Card

Stitched by: Kaz Bowen

Biography

Shifa was born in 2017 and she was a healthy baby. We were thrilled to have such a beautiful girl as our first born and enjoyed the first day with her but as time went on we noticed how she began to become lethargic, found it difficult to feed and her tight grip around our fingers when she was first born was growing weaker as the second day approached. She was also vomiting a dark substance and when we made the midwife aware of the symptoms we were advised we were first time parents and that our daughter was just fine. We were not convinced and our gut feeling was to stay in the hospital despite the professionals wanting to discharge us.

On day 3 in the early hours of the morning she became cold to touch and even more lethargic and Shifa's dad at this point asked to see a consultant. They came and took a blood sample to find that her blood ammonia level was 900 going onto 1000 which is deadly. Our little girl was slowly being damaged by this toxic substance that was in her blood stream since birth hence the symptoms.

The doctors came and told us that they suspected an illness called propionic acidemia but they would know more once we got to Royal Manchester Childrens Hospital. Shifa was blue lighted to Manchester and the emotional roller coaster started from there. She underwent a lot of treatment and they induced her into a coma. When she woke a week later she had seizures and we were officially given a diagnosis of propionic acidemia, a very rare genetic disorder that occurs 1 in a 100 000.

So coming to the present day Shifa has just turned 6, contrary to what doctors said. She is a lovely happy girl who loves sensory experiences, high pitched sounds and the twirly woos! Due to the damage at birth she functions similar to a 6 month old. She cannot walk or sit independently, she requires us to feed her via a PEG placed in her tummy and she is on several medications to control the ammonia levels in her blood as well as anti-epileptics. She is also severely visually impaired as a result of the optic nerve damage at birth. She has a lot of medical professionals involved in her care and she also attends a special school 5 days a week.

She has two younger brothers who certainly keep her entertained!

In a nutshell Shifa is the princess of our household and truly loved by all!