DERRY, NH –Amy and Jason Marquis’ daughter was given a death sentence. Riley, also known as Little Miss Roo, has Leigh’s Disease, one of the most devastating forms of Related to the mitochondria. disease.
When they got the diagnosis on March 9, 2014, “I asked the doctor, ‘Is this a death sentence?’ and she said yes,” Amy said, noting they were told it’s a slow progressing disease and they would likely have a couple years. But Leigh’s kids actually experience a rapid regression and the 17-month-old has had several close calls with death, the last of which landed her in the hospital for more than three months and included a bout with viral meningitis and led to a tracheotomy for her to breathe. Riley was finally able to go home on Aug. 7.
When Amy heard about the MitoAction Energy Walk & 5K presented by America’s Compounding Center, she said, “We needed to do this. We need to get awareness out. Let people know it’s a disease. I have to explain it so many times.” Amy captains the team “Little Miss Roo.”
The 10th annual MitoAction Energy Walk & 5K will be held Sunday, Sept. 14, 2014 at DCR’s Mother’s Rest in South Boston, MA. For more information and to register, please visit www.mitoaction.org/energywalk.
Riley has a twin brother named Carter. The Derry, NH, family noticed that at 9 months, Riley couldn’t do the same things as Carter. Riley had low muscle tone, she was wobbly and fell a lot, and she stopped crying. “She hasn’t cried since 9 months,” Amy said.
Then Riley had what was thought to be a seizure and the journey to a diagnosis began.
Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and mental disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; Episodes of abnormal electrical activity in the brain.; vision and/or hearing loss; GI issues; learning disabilities; and heart, liver, or kidney failure. About 1 in 2,000 people has Mito. It’s progressive and there is no cure.
The Marquis know more heartbreak than most. After taking fertility drugs in 2009, and it taking on the first try, Amy lost one triplet in utero and the other two were stillborn. In 2012, their son lost his life in a day care accident. And now this …
Amy’s mission is to raise awareness about Mito. “It gives me something to do,” she said. “It’s my outlet. I’ll have time to cry later.”
To that end, Amy has started the Facebook page “Prayers for Roo” to share Riley’s life with others. She made shirts for Riley supporters that contain the words “Mito awareness” that friends all over the country wear. She drops Mito facts whenever and wherever she can. She’s part of different online forums and boards.
And they are attending the MitoAction walk, hopefully with Little Miss Roo in tow. “I’m looking forward to the experience and getting together with all the people there, to share awareness for the same disease,” Amy said. “I’m looking forward to bonding with families going through the same things.”
“MitoAction is the voice of the mitochondrial disease patient community, and we are inspired by the teams, families, sponsors, and individuals who come together each year to support this event,” said Cristy Balcells, MitoAction’s Executive Director. “For us, celebrating the 10th anniversary of the MitoAction Energy Walk & 5K signifies much more than excitement about an annual event. September 14th is a celebration of the heroes in our community, of our shared successes and frustrations, and of tremendous growth. We are proud to walk together and to raise awareness in Boston about mitochondrial disease.”
The walk is presented by America’s Compounding Center and sponsored by Stealth Peptides, Courtagen Life Sciences, Inc., ThriveRx, Acton Pharmacy, and Deep River Snacks.
Proceeds from the walk/5K benefit MitoAction, a Boston-based 501(c)(3) dedicated to improving the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives. Learn more at www.MitoAction.org.