Thanks for taking the time to visit True Potential's JustGiving page.

Our charity this month has been nominated by a member of staff called Mark David Johnson to support his close friend Ally. Please take some time to read Ally's story below:

I first took my daughter Nala to the doctors at 6 month old but just kept getting told to keep and eye on things and wait until she was walking properly. Nala then went on to see physiotherapists but unbelievably got discharged from two separate ones, in two different areas, even though her mobility was getting worse and not better. In October last year we again got referred for physio, x-rays and to an orthopedic. This resulted in a concern regarding a neuromuscular disorder and placed on a waiting list to see a pediatrician. I had to call daily for weeks to push this appointment along and we were then referred for an MRI, again being placed on a waiting list.

After more weeks passed Nala continued to get worse and an ambulance ended up being called as friends and family were fed up of waiting and knew she would be seen quicker in this case. It was there at the Royal Victoria Infirmary that she was sent for an emergency MRI due to concerns regarding a brain tumour.

A few hours later we were given the heartbreaking news that although there was no tumour, an extremely rare brain disorder had been found called Metachromatic Leukodystrophy or MLD. This is a genetic disease so our younger daughter Teddi (11 months) was then brought in for tests and it was found she also has the disease.

Heartbreakingly Nala cannot be helped, her brain has deteriorated too far already so no treatment can be offered, she will continue to lose all her functions and children with this disease have a short life expectancy.

Teddi has been caught quick enough and has received gene therapy treatment and chemotherapy. This involved months in Manchester Childrens hospital, Just Teddi and I.

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