Dylan is two years old and his parents Michelle and Alan Finglas are fighting to save his life.
“When Dylan was born it was the happiest day of our lives.”
Alan says: “Nothing could’ve prepared me for how happy and complete my life would feel… he’s a wonderful child”.
“At around 18 months, we had a few concerns about Dylan’s development. We noticed he wasn’t reaching his milestones”, explains Michelle.
After a referral to Temple Street hospital, they received the diagnosis that Dylan had Multiple Sulfatase Deficiency, a “clinically devastating and fatal” condition. The genetic condition is so rare that there are only 17 known cases in the world.
Children with MSD rarely see their 10th birthday. Without treatment Dylan will lose the ability to sit, stand and walk. His bodily functions will shut down. Now Michelle and Alan are fighting to raise money for a potentially life-saving clinical trial that desperately needs funding. Currently researchers have cured the disease in lab trials but they need funding to start developing treatment for humans.
“We need help, money is the biggest obstacle to giving Dylan a chance at life. I don’t want to have to say goodbye to my little boy.”
Dylan’s parents have set up MSD Action Foundation with the hope of raising €2m to fund clinical trials.
To support Dylan, visit SavingDylan.com
Via Joe.ie
