Imagine riding your bike from California to Montana. Well, one man is doing that to raise awareness for Batten disease. He stopped in Idaho Falls on Wednesday.
Batten disease is a neurodegenerative disease that has affected two young boys he is trying to help.
“We found out about a year and a half ago, that my oldest grandson, Titus, who recently passed away about a week and a half ago from Batten Disease. He had this neurological degenerative disease that’s heredity,” said James Murphy, the grandfather of the two boys.
Since the disease is hereditary, the family decided to get the younger sibling, Ely, tested. He was positive. Ely is at the stage where his symptoms won’t show for another three months, but the family has learned about an experimental treatment that can possibly save his life.
“There’s an experimental study that going on at the children’s hospital in Columbus, Ohio, at the Batten Center, where they have been testing enzyme therapy. This treatment is an every other week treatment that he’ll have to do from now until the end of his life, basically, until something else better comes along. It’s not a cure, but it does prolong life and it stops the disease at bay, hopefully. It stops it from degrading the nervous system,” said Murphy.
Ely was the fourth out of five available slots for kids to get the treatment this year; and with that, the family started the campaign Ride for Ely. Their friend, Steven Rockey, is cycling from southern California to Montana to raise awareness and money for Ely’s treatment.
“It’s just been amazing at how many people have joined in to help with my kids and this whole craziness. When you think about how crazy and terrible this really is, you really kind of feel like it can be your worst day over and over and over. And what we’ve found is that it’s helped us with effectively going after joy everyday,” Murphy said.
Ely was just officially approved on Wednesday to have his brain surgery this Friday. The family’s GoFundMe page has passed their goal of $35,000 in just one month.That will cover the first year’s expenses of Ely’s treatments and travel.