Mya-Louise’s Story

Mya was born at 33 weeks gestation as she had IUGR (Intrauterine Growth Retardation) and was not growing properly, she was no longer safe in my womb.


She was born via emergency C-Section weighing 1.37 grams, from there on in we did not know what a rollercoaster journey was lying before us.

Mya was in SCBU (Special Care Baby Unit) for 6-7 weeks before coming home, when she came home things were very difficult with feeding and she cried in pain which led to more acute admissions into hospital with no explanation.

By the time Mya reached 5 months old, she was ventilated and CATS (Children’s Acute Transfer Service) retrieved her and transferred her to Addenbrokes PICU (Paediatric Intensive Care Unit) where we nearly lost our little girl.

After that we were sent to St Mary’s Hospital where we stayed for a number of weeks and finally found out she had an unsafe swallow, that was why feeding was so hard. She had choking episodes together with going blue around her mouth whilst feeding. We were then transferred to Chelsea and Westminster Hospital where we started our journey at this wonderful hospital under the Gastroenterology Team who have done so much for us and many others like us.

Mya-Louise is 4 years and 10 months old, she has Mitrichrondria, Bulbar Palsy, White Matter Disease (Leukodystrophy) as a result she has Intestinal Failure, she also has Mannanbindinglectin Deficiency (a low immune system), Reflux and continual Diarrhoea. Mya is on Total Parental Nutrition to prevent her failing to thrive and she has this via her Hickman Line over 18 hours a day. Her medication is given via her Gastrostomy Button.

Like many Gastro children, Mya-Louise suffers a lot of pain, bloatedness and tires very easily. She needs constant supervision like all of our special children that we have been blessed with.

Mya will never be accepted for any Transplant as her disease is all to do with the cells in her body not functioning the way they should, so has a life-limiting condition. This is sometimes very hard for us as a family as Mya has an 11 year old brother and Mya’s Dad works away in Afghanistan long term. This is very hard to manage when Mya is in hospital for long periods or going to and from the hospital for appointments. This has meant that while Mya was in hospital for a long time last year, Sean, her brother, had to move to a different area with family and go to a new school. This has been very hard for us as Sean’s behaviour has been extremely challenging which is understandable as he has had his family taken away from him. It has been very hard and emotional as I felt very torn in this situation, which will happen again and again, as I could only be with Mya and Sean could only visit us at the weekend.

I hope this gives you an insight into how complicated a sick child and their family’s lives are and how they are affected.

Many thanks for letting us share our story.

This was written in January 2015 and will be updated soon – for ongoing news please check our Twitter feeds or Facebook page.