By Harry Walsh
MEMBERS of a Donegal family are to cycle 240 miles from Glasgow to Arranmore island to raise awareness of a rare condition which claimed the life of their two-year old daughter.
Katie Rose Rodgers lost her eight-month battle with mitochondrial disease in December, and her family have set up a foundation to help others.
Speaking to the Donegal News from Arranmore this week, her mum Fiona (28) said herself and husband Sean (31) also have sixteen-month-old twin girls who have a 25 per cent chance of contracting the disease.
“When Katie was first diagnosed last April, I’d never heard of mitochondrial disease. We were living in Canada at the time and we decided to move home when we found out. When we came home and told our GP she had to look it up. It was great that she was so willing to learn more about it, but if doctors don’t know about it then it won’t be at the forefront of their mind and this could end in delays and misdiagnosis,” Fiona said.
With that in mind, the family decided to set up the Katie Rose Foundation.
“We have three main aims – the first is to raise awareness – our second goal would be to fund research projects. We think these are going to be in England, though, as we haven’t come across any here and, thirdly, we would love to be able to provide financial assistance to the families of children with mitochondrial disease.”
While it’s classified as very rare, Ms Rodgers said that she knew of five children, including Katie, in Donegal alone who have it.
“We also have twin girls Clodagh and Ciara and they have a 25 per cent chance of having the disease. They’ve had tests and so far, so good. All we can hope is they’ll be alright.
“We weren’t aware of the disease when they were born as Katie Rose had yet to be diagnosed. It’s a worrying time,” she said.
Despite their grief, Fiona and Sean are determined to turn their loss into something positive.
Earlier this year, relatives approached the family saying that they would like to do something in memory of Katie.
“Some of our family are going to cycle from their home in Glasgow over four days to Katie’s resting place in Arranmore.
“It should be a really nice event to have all of our family gather there and our target is €4,000, but anything above that would be a welcome bonus,” she said.
Mitochondria are tiny parts of almost every cell in your body. Mitochondria are like the power house of the cells. They turn sugar and oxygen into energy that the cells need to work.
In mitochondrial diseases, the mitochondria cannot efficiently turn sugar and oxygen into energy, so the cells do not work correctly.
“Statistically, more children pass away with mitochondrial disease than all other childhood cancers combined. That struck a real chord with me. It’s hard to diagnose and there’s a general lack of education out there,” she said.
“Young Leah McGeehan from Fintown lost her battle with the life-limiting Mitochondrial Disease in April. She was the same age as Katie and the cyclists are going to stop at her grave on their way through Fintown,” she added.
HAIR DAY
Closer to home, Terence Boyle, proprietor of Atomic Hair Design, Silver Tassie Hotel, is donating all proceeds from Thursday, July 30, to the Katie Rose Foundation.
“A staff member is related to Katie Rose and it’s something that’s affected us all here at Atomic. All our takings on Thursday, July 30, will go directly to the foundation. Also, we’ll have a special blow dry offer for €15 while we’ll also gladly accept any donations from the general public,” Mr Boyle said.
The cyclists will leave Glasgow on Thursday, June 30, arriving on Arranmore on Sunday, 2.
More information will be available from the website is www.thekatierosefoundation.com which is expected be up and running within the next few days.
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