Ethan Faneran-Burley was diagnosed at two years old with Mucopolysaccharidosis type 6 (or MPS type 6). It’s a progressive, degenerative, and ultimately fatal condition. Those with MPS type 6 don’t produce the enzymes which break down GAGs. Instead, they store the GAGs in every cell of their body which causes extensive damage. Doctors told Ethan’s parents they could expect him to live somewhere between the age of 5 and 10 years old.
He’s now 9.
But the family has rejuvenated hope for a cure! There is a new gene therapy trial going on in Italy and Ethan may be eligible! The clinical trial’s goal is to help MPS type 6 patients produce the enzymes they’re lacking on their own. Not only would that mean a stop to symptoms, it would eliminate the need for intravenous enzyme replacement therapy which Ethan has been undergoing every single week.
Ethan and his family are flying to Italy this October to see if he is eligible for the trial.
While Ethan would still have to live with the damage the disease has already caused, his participation could significantly change the course of the rest of his life. His growth has been stunted as a result of the condition and at only 9 he’s already undergone countless surgeries on his back, liver, heart, neck, eyes, and ears. Each one posed extreme risk due to the possibility of complications with the anesthesia. His next surgery is scheduled for this December.
Through all of it, Ethan’s remained strong.
“He’s resilient, strong and courageous.”
If Ethan is eligible, his entire life would change.
The Fanneran-Burley family is asking for donations to help them with the costs associated with the travel to Italy. If the trip in October goes well, Ethan will have to return for a second round of screening and ultimately if he’s chosen as a participant, the family (mother, father, and little sister and brother) will have to live in Italy.
If you’re able to donate, visit https://www.gofundme.com/cureforethan
If the family is able to raise any extra funds they would love to help other families with MPS type 6 children make the trip.
October is little Ethan’s birthday month, and what better present could there be than a successful screening? Keep your fingers crossed for Ethan and consider donating if you can!
You can read the Fanneran-Burley family’s whole story here.