Brave Ava Rose’s family taking on the London Landmarks Half Marathon in her honour

The parents of two-year-old Craigbane “warrior princess” Ava Rose Hood are taking on the London Landmarks Half Marathon in her honour while fundraising for six “amazing” charities.

Speaking to The County Derry Post, Ava’s mum and dad Cathy and Jonny, explained it had quickly turned into a family affair and her uncles David and Gareth and her aunt Sam would also be running.

The London Landmarks Half Marathon takes place on April 12 and Cathy and Jonny’s online GiveWheel fundraiser ‘London Landmarks Half Marathon for Ava Rose’ (https://gvwhl.com/ECAJ6) is just shy of its £7,000 target, with five weeks to go.

The charities the families are supporting are: Young Lives vs Cancer; Angel Wishes; The Children's Cancer Unit Charity; B Positive; Little Heroes; and Powered By Poppy.

“They are all fantastic organisations,” said Cathy, “which just make life that little bit easier for families whose children are very ill and undergoing medical treatment in hospital.”

“When Ava Rose was born she was in the Intensive Care Unit (ICU) of the Royal Belfast Hospital for Sick Children,” said Jonny.

“Cathy was in there nearly 24/7 for five or six months and I had to take a period off work and one of us was doing the days and one of us was doing the nights, so we really, really appreciate all of the support we got throughout.”

It was at Cathy’s 12-week scan she and Jonny got an inkling of how ill Ava Rose was and the challenges that lay ahead for them all.

“They told me the baby was measuring very big and I was offered Amniocentesis [a diagnostic test to check for genetic conditions like Down syndrome or neural tube defects],” recalled Cathy.

“We both agreed that whatever the outcome we were lucky we were able to have a child,” she added.

“We were told then Ava Rose was going to be born with Down syndrome and after a while it appeared she had Cystic Hygroma as well and her chances of survival were very limited.

“Cystic Hygroma is a lot of fluid around a baby’s neck and spine. The doctors could see it on Ava Rose’s ultrasound but when she was born it was barely noticeable,” said Cathy.

Due to concerns about Ava Rose’s health, she was born two weeks early by cesarean section.

“When she came out, I thought she was dead,” said Jonny. “She was straight onto the operating table down in the theatre and there were half a dozen doctors and nurses working on her, administering oxygen and all. She was in an induced coma. She was very, very sick. It was probably about two weeks before we even got to cuddle her.

“She went from ICU to High Dependency Unit (HDU). She was very jaundiced and they tried to treat her with light therapy which didn’t seem to work. She had a feeding tube inserted and she was also on oxygen,” he said.

“I’ll never forget it, on the Wednesday the doctor said, ‘Can you sit down’ and we were, ‘What now?’” said Cathy, “because we thought we were on the road home.”

Cathy and Jonny were told Ava Roses’s bilirubin levels were very high [an indicator of liver dysfunction with symptoms including jaundice]. She was diagnosed with Transient leukemia which can be very common in children with Down syndrome.

“Her levels came down,” said Jonny, “just before the stage she would have had to be administered chemotherapy at eight weeks old.

“We eventually got her home,” said Cathy, “and she was on her feeding tubes and oxygen and a stat monitor [vital signs monitor] and her bloods were checked every 12 weeks.

“And then, just before her first birthday, Ava Rose’s platelets went haywire and she had to have a lumbar puncture to see what was going on. It came back to say she had to have chemotherapy.

“There were leukemia cells present in her bone marrow.

“The medical professionals put a plan in place and talked us through it. Ava Rose had Myeloid Leukemia of Down Syndrome. Her birthday was in March and her chemotherapy began in the last week of May,” said Cathy.

“There were four different cycles, lasting five months in total, during which she also contracted parainfluenza,” said Jonny, “ and we were in the hospital and then we got home maybe for maybe five days.

“She rang the bell on December 12 and thankfully she is now thriving. She is better than ever. Her hair is coming back. We are nearly getting to another ponytail stage. She is doing brilliantly,” he added.

'What a story' - Young Derry GAA star with rare illness feared he'd never play again

Ronan was determined to get back onto the football pitch after diagnosis of rare condition meant he might never play again

Dana stunned by wedding tale during emotional County Derry faith retreat

Local woman Diane Heaney reveals she hitched a lift through the Troubles to see the singer on her wedding day

Regarding the London Landmarks Half Marathon, Jonny explained the family’s motivation as coming from a place of gratitude.

“Like anyone facing this situation, we were completely in the dark about what was going to happen but, we had a superb social worker in the hospital and she talked us through everything,” said Jonny.

“There are charities available for all the different aspects and that is when we got onboard with them. We were helped financially, emotionally and practically. Going through the journey we did, we were just so thankful for the support we had from the charities and friends and family as well,” he added.

“We also have a newfound admiration for the nursing and the doctors and everyone in the hospital. The work they do is amazing. They are not doing 12-hour shifts, they are doing a 16 or 17 hour day and they are back in the next day and they are always coming in with a smile on their face and making it as pleasant a journey as it can be for the circumstances,” said Jonny

“We were very, very moved by our experience,” added Cathy, who hinted the London Landmarks Half Marathon might not be the end of their charity fundraising “because of the impact it had on us during Ava Rose’s journey.

“We are just thankful we came out of it at the other end,” added Jonny, “through all the kind support we had during it. It has changed our whole outlook on things.”