Closed petition NHS England and NICE need to approve the funding for LAL disease (wolmans)

Closed on 3 May 2017

NHS England and NICE have rejected to fund a life saving treatment for children suffering from LAL/Wolmans disease-stating it's too expensive. The appeal is taking place on the 25th April and we need the funding to be approved, otherwise children suffering from this disease will die within months.

My baby niece Aiza, is only 11 months old and if this appeal doesn't go through she will be one of the first to die due to being the youngest. We've been told her health will detroriate within 3months. This treatment is a breakthrough for Wolmans disease, in the past there was NO treatment and infants would die by six months old. Today, thanks to the treatment, there is a six year old who had been on the clinical trials for this treatment and is leading a normal life.This treatment WORKS and the evidence is the fact that we have children LIVING past the six months mark and leading normal lives. NHS England and NICE are refusing to fund the treatment, condemning the sufferers to DEATH. We cannot have this happening in today's day and age! PLEASE HELP by signing the petition below!