Dylan’s Story

December 2014Dylan Finglas is a happy, beautiful 5 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 stand/walk, 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.

Update, As MSD has taken its grip, Dylan cannot walk, he has a feeding peg implanted in his abdomen, his eyesight is compromised, he has neurological problems, he has nerve issues and he endures joint pain daily. On the plus side, his heart is good, his breathing is good, his hearing is good, he laughs and smiles most days. There is little doubt that his quality of life has been compromised but there is real hope that further deterioration can be halted giving the best possible quality of life. You support is needed so we can deliver for Dylan and other patients that are affected by this clinically devastating condition.

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 now critical and urgently needed to support research advancements that, we hope and expect, will lead to clinical trials and pilot studies. These are necessary steps in order for children to benefit 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 a treatment/cure is produced for affected patients to benefit. Please give these children a chance at life.