Sara Nolan and her husband Stephen have four children: 10-year-old Jack, 6-year-old Freya, and 3-year-old twins Katie and Áine. Their daughter Áine has osteopetrosis, with which she was diagnosed in 2021.

Osteopetrosis is characterised by overly dense bones throughout the body. Infantile osteopetrosis is seen in 1 in 250,000 people and the only treatment, provided its caught in early stages, is a bone marrow transplant. Talking to Dublin Live, Sara revealed that she and her friends and family will be walking 200km in aid of the Barretstown and ChildVision charities.

“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 said.

Áine is now doing “very well” and is attending ChildVision’s early years play school two days a week. She also has hydrocephalus and visual impairment due to damage done by her thickened skull bones.

Sara explained, “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 loves it.”

Sara and Stephen, along with their friends and family, have decided to run a 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 May 14th and July 8th, finishing with a raffle.

“It started on Áine’s 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 8th will feature over 40 prizes won, including a kids smart watch and a family pass for Dublin Zoo, sponsored by local businesses.