Support a Family

Hi, I’m Abbie and I wanted to raise some money to support the family of a little girl that I teach who has been diagnosed with 4H Leukodystrophy POLR3B.

The funds raised will go directly to the family who are putting them into an account for medical purposes and to support them as they travel to appointments to speak with specialists across the world.

Please donate whatever you can to help cover some of these costs and to relieve a little bit of the pressure that this family is currently facing.

Below is Sara’s story,

Earlier this year, after many tests and scans, Sara was diagnosed with 4H Leukodystrophy POLR3B, also called Vanishing White Matter disease.

This is a rare degenerative disease that affects the nervous system and means she will slowly lose the ability to walk, talk, hear, eat or do anything for herself.

There are a handful of cases registered in the UK, and as far as we know, Sara is the first registered case in Northern Ireland.

The doctors locally try their best, but they don’t have the relevant knowledge regarding what therapy she would need or the timeline of the progression of the disease.

There is no cure for this life-shortening and cruel disease.

There are some experts in the USA, Canada and Amsterdam. Sara attended a conference in Philadelphia where she had the chance to meet other families with this disease. The next trip is to Amsterdam to visit and expert closer to home and set up a plan for Sara’s treatment.