A Dublin mum and her family are walking 200km in aid of two charities that helped their three-year-old daughter who has a rare bone condition.
Sara Nolan and her husband Stephen are from Clontarf, and they have four children 10-year-old Jack, six-year-old Freya, and three-year-old twins Katie and Áine . Their daughter Áine has osteopetrosis, which she was diagnosed with in 2021.
Osteopetrosis, or stone bone, is characterised by overly dense bones throughout the body. Infantile osteopetrosis affects 1 in 250,000 people and the only treatment is a bone marrow transplant as long as it is caught in the early stages. Speaking to Dublin Live, Sara said that she and her husband Stephen as well as their family and friends will be walking 200km in aid of Barretstown and ChildVision.
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She said: "Áine has osteopetrosis and she was diagnosed in 2021, When her bones were remodelling the old ones weren't breaking down and reabsorbing, they were staying so her bones were just continuously getting thicker and thicker, pushing the bone marrow out of the middle of the bone and that's why she needed to get the bone marrow transplant.
"She got the transplant on 8 July 2021 in Crumlin Children's Hospital. She spent three and a half months there, the staff were just fantastic and we got to know everybody very well."
Now, Áine is doing "very well" and she is attending ChildVision two days a week for early years play school. She also has hydrocephalus and visual impairment due to damage done by her thickened skull bones.
Sara said: "The dense bones in her skull damaged the nerve endings in the back of her eyes and she has little to no vision in her left eye and very little in her right. So she was put on the legally blind register in January 2022, and she started going to the early years intervention in ChildVision in September 2022 and she goes down there two days a week.
"She loves it. Absolutely absolutely loves it," added Sara.
Sara and Stephen together with their family and friends have chosen to do a big fundraiser for two charities; Barretstown where they have spent a few weekends at the family camps and ChildVision where Áine goes to play school. They will be walking 200km between 14 May to July 8, and finishing with a big raffle.
Sara said: "We're doing the walking challenge from 14 May, I've challenged myself to walk 200km and a lot of my friends and family have joined so we've set up a little club on Strava [the app] and there's 16 athletes on it now and they're doing their own kilometres as well as me doing my own.
"It started on Áine birthday on 14 may and it will end on 8 July which is Áine's second bone marrow transplant anniversary, or her second re-birthday as I like to call it." Sara said that the raffle they are holding on July 8 will see over 40 prizes won including a kids smart watch, a family pass for Dublin Zoo, and much more.
Sara praised local companies for sponsoring all the prizes for the raffle. "The support we've been given is absolutely amazing. Any donation made no matter how big or small will all get entered into the draw. "
For more information and the support the fundraiser visit idonate.ie
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