Dylan’s Story

Dylan Finglas is now 10 years old (as of 2023), just after his 2nd birthday he was diagnosed with a neuro degenerative condition called Multiple Sulfatase Deficiency (MSD). From 3 years of age Dylan began to lose the skills that he had gained. This was the beginning of a certain deterioration due to there being no ready treatment to slow or stop the condition. In the next years his sight was severely compromised & then lost, his ability to walk with assistance was lost, his ability to stand and sit up was lost, the ability to swallow safely was lost and he is now fed via G-tube. He has nerve damage due to the neurological decline. Movement disorders are often associated with MSD and Dylan endured joint pain, tight tendons and tight muscles and had to go through a few surgeries to try to eliminate this pain. Children with MSD are most often expected to have severe brain damage by the age of five or six years old with symptoms beginning to manifest much earlier. This tragic outcome correlated with Dylan’s deterioration.

It is a 100% certainty that the trajectory for many MSD patients will end up just like Dylan’s unless research can help to deliver treatments options from bench to bedside. It’s any parent’s worst nightmare to have to watch their innocent child’s health and wellbeing deteriorate.

On the plus side for Dylan, his heart is good, his breathing is quite good, his hearing is okay, he laughs and smiles most days, with stimulation. There is little doubt that his quality of life has been compromised but there is real hope that further deterioration can be halted. Trying to give the best possible quality of life to children affected by MSD is possible. Your support is needed so we can deliver for Dylan and other patients that are affected by this clinically devastating condition.

The severity of MSD often depends on the age of onset of symptoms. There is a neonatal subtype of patients, a late infantile subtype, and a juvenile subtype also. Dylan’s regression correlates with a classic late infantile case of MSD. A study published in 2020 suggests an average life expectancy of 13 years of age based on a cohort of 35 patients. There were some patients that survived much longer, often due to a juvenile onset and excellent care but their quality of life was still severely compromised from a young age. Patients surviving much longer than the average life expectancy increased the average age of survival in the forementioned cohort. Leaving the above study aside, often children affected by MSD don’t live to see their 10th Birthday.

Hope – Potential treatments exist

Gene therapy has successfully stopped MSD in lab tests. late november 2014 crop
Funding is now critical and urgently needed to support research advancements that will lead to clinical trials. 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.

Registered Charity Number 20100957