BETSY Kay was a picture of health when she arrived in the world on March 6, 2014. But Betsy's failure to gain weight in the first few weeks of her life prompted her concerned parents, Kim Nicholson and Paddy Kay, to pursue further investigations.

Kim explains that despite Betsy weighing a healthy 9lb 10oz when she arrived, she lost 13 per cent of her body weight within the first week.

After a fraught few weeks the couple discovered their daughter was suffering with mitochondrial disorder, a condition which presented itself in Betsy failing to thrive, having a thickened heart muscle and high amounts of acid in her blood.

According to recent research, about one in 200 people carry a mitochondrial genetic defect. Not all will develop the illness. The risk of developing, or being born with this condition, is around one in 5000.

The disease can affect patients of any age and often involves different organs, making it very difficult to determine how many patients have mitochondrial disease.

Recalling their devastation at the diagnosis, Paddy says: "Even right up to the diagnosis we just didn't think it would be anything serious and when it came it hit us like a tonne of bricks."

Betsy has muscle weakness and tiredness associated with her heart condition, as she has a thickened heart muscle.

"We don't have a prognosis and that has been the hardest thing as a family. You have to take every day as it comes," says Kim, a secondary school teacher who also has a six-year-old son, Oscar, from a previous relationship.

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Now she and Paddy, a builder, are keen to raise awareness about the disease. Last year they also launched a fundraising campaign and have set up a JustGiving page.

"We would like to raise awareness and funding for research in order to beat this condition, so that no more families have to endure what we are going through," the couple write on their JustGiving page.

"We are holding a number of events, including marathons, fun runs and charity nights. Come along, wear a band and share our story. Alternatively, contribute as much as you can to help research a prevention and cure for Mitochondrial Disease."

Fundraising bakes, a non-uniform day at Oscar's school and Paddy's participation in a half marathon in Madrid have helped to raise more than £12,000, topping the family's initial £10,000 target.

And the funds are expected to be boosted even further following Kim and Oscar's participation in the 5k Color Me Rad event at Harewood House.

Keeping it in the family, Fulneck School in Pudsey where Paddy's mum, Lyn, has worked as a nursery nurse for 15 years, have selected mitochondrial disease as their chosen charity.

A balloon launch, held at the historic Moravian settlement where the school is located, was given a celebrity endorsement when Paddy's cousin, TV presenter Gabby Logan, came along to support the cause which is so close to the family's heart.

"As a family we are all really close. It was really helpful to have that interest it generates when it is someone in the public eye. It helped with awareness," says Lyn, of Gabby's involvement.

"We were genuinely touched. She was straight on board and we really appreciated her coming along," adds Paddy.

Fulneck School Principal Deborah Newman said: “We are delighted that Gabby agreed to perform the honours for us and help give our charity balloon race a much needed 'lift’.

“Lyn has been a valuable member of the Fulneck nursery team for the last 15 years, and when we found out her granddaughter, Betsy, had been diagnosed with mitochondrial disease, the whole school decided it wanted to help raise money and awareness of it.

“Back in February the charity committee sold single red carnations for people to send to each other to raise money."

She added that the Fulneck Parents’ Association’s annual ball this month was also donating its proceeds to the charity.

To support Betsy and her family visit justgiving.com/betsysfund. For more information about Mitochondrial Disease visit thelilyfoundation.org.uk