Dylan’s Story

December 2014Dylan Finglas is a happy, beautiful 4 year old. Dylan’s quality of life has been affected by this devastating illness called Multiple Sulfatase Deficiency. Without something to stop deterioration, most children won’t live to see their 10th birthday. Rapidly in the next years, unless treated, most or all of the following will be affected; his sight will be compromised & lost, hearing will be lost, the ability to walk/stand, the ability to swallow and his organ functions will deteriorate and eventually fail. Children with MSD would be expected to have severe brain damage by the age of five or six. This tragic outcome is inevitable. It is a 100% certainty unless the treatment is developed for humans. Currently there is no ready cure, nor is there any approved treatment to slow the condition. It’s any parent’s worst nightmare to have to watch their innocent child’s health and wellbeing deteriorate.

Hope – A Cure Exists

Gene Therapy at The Telethon Institute of Genetics & Medicine in Italy has successfully stopped MSD in lab tests. late november 2014 crop
Unfortunately the positive research results have stopped there. Funding is critical and urgently needed to push clinical advancements to human stages as soon as possible. There are many research areas that need funding to advance. Every donation counts in our goal to save Dylan and all children with MSD throughout the world. Time is of the essence in order to treat these children before significant symptoms of the condition progress. Months, weeks, and days matter… Your help spreading the word and donating will help ensure the cure is produced for affected patients. Please give these children a chance at life.