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by GingerD

Kayla West’s cousins have mitochondrial disease. “I helped them feel like normal kids,” she said. “That’s what they wanted.”Kayla spent two years helping to take care of her cousins before her family moved from Washington to Texas. She would make sure they didn’t get too hot; she hooked them up to their heart monitors, oxygen, and feeding tubes before bed; she played with them; and she carried them if they needed it. “They became a huge part of my life,” she said.

Feb 07, 2017 Comments: 0
by GingerD

The groom and groomsmen wore BowTie Cause MitoAction bowties. The bridesmaids wore green. Every guest got a MitoAction bracelet. Even the wedding invite was green and included the Mito ribbon.

The bride, Devon Gottfurcht, has mitochondrial disease and she used her wedding to Dan DeSario as a vehicle to raise awareness about Mito. “There’s not a lot of awareness for mitochondrial disease,” she said.

Oct 26, 2016 Comments: 0
by GingerD

After Jessica Gemayel lost her battle with mitochondrial disease a few months ago, her friends gathered to figure out what they could do in her memory.

Courtney Brown, Jessica’s best friend since middle school, and the rest of their gang decided to form Team Jess for the MitoAction Energy Walk & 5K presented by Stealth BioTherapeutics on Sunday, Sept. 18.

Jun 17, 2016 Comments: 0
by GingerD
Mitochondrial disease part of curriculum for Long Branch, NJ, seventh-graders

The seventh-graders at Long Branch (NJ) Middle School know about mitochondrial disease thanks to a creative teacher.

May 19, 2016 Comments: 0
by GingerD

 What does quality of life mean to you?

One challenge when creating clinical trials for people with mitochondrial disease is the tremendous diversity that exists in our community. Even patients with the same genetic diagnosis may have different symptoms and varying degrees of severity.

May 09, 2016 Comments: 0
by GingerD

Lincoln Ogonowski’s mitochondrial disease limits his mobility, so big brother Luke Krumich will often play with Lincoln’s toys for him. “I know what he likes and what he thinks is funny,” Luke said.

Lincoln is 3 years old and has Leigh’s syndrome, a devastating form of mitochondrial disease. Luke, 12, is his protective, loving, awesome older brother. The sons of Dyna and Rob Danger of Freehold, NJ, are as close as brothers can be.

Apr 18, 2016 Comments: 0
by GingerD

Double H Ranch is a camp for children who are dealing with serious illnesses. Thanks to the camp’s amazing medical staff, Double H gives children who cannot attend conventional sleep-away camps due to medical issues a chance to go away, have fun, and be just like any other child. Just ask Susan and Mike Nadrich and their daughters, Madeline and Tyler.

“It’s one of the most amazing places. It’s magical,” said the East Amherst, NY mom.

Mar 14, 2016 Comments: 0
by GingerD

Lauren Petty uses an electric wheelchair because of balance issues. She has urinary and bowel incontinence. She’s had a g-tube for the last two years and recently got a G-J tube. She has dysautonomia. She needs medications throughout the day. Lauren has mitochondrial disease along with progressive brain atrophy and those are just some of her symptoms. "It's a lot for a typical camp to monitor," her parents, Jennifer and Bryan, say.

Feb 19, 2016 Comments: 0
by GingerD
10-year-old author focuses on what Mito kids can do 

“This book shows that even though children who have disabilities have their struggles, they can still do things in their own, different way.”

--Author Noah Polatty’s favorite line from a review of “Sports Impossible”

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Writing is a struggle for Noah Polatty. That’s what Brandi and Chad Polatty were told about their son, who has mitochondrial disease.

Dec 22, 2015 Comments: 0
by GingerD

 

1 girl + 1 community = big differenceBrionna & family have right equation to raise awareness

Never underestimate the power of one: one girl, one mom, one family, one community, one cause.

Nov 06, 2015 Comments: 0

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