AVA CONTINUES TO THRIVE HAVING DEFIED THE ODDS
TUBBERCURRY’S AVA FINN WAS ONLY SIX MONTHS OLD WHEN SHE WAS GIVEN WEEKS TO LIFE. THANKS TO A CLINICAL TRIAL, AVA (7) IS NOW THRIVING AND LIVING A NORMAL LIFE AFTER RECEIVING TREATMENT FOR HER RARE CONDITION AT TEMPLE STREET. HER MUM AOIFE FINN SPEAKS TO JESSICA FARRY ABOUT THEIR JOURNEY.
WHEN Ava Finn was j ust six months old, her parents were told the news that no parent wants to hear; she had only weeks to l i ve due to a rare metabolic disorder. The odds were s t acked against her, but Ava i s now s e ven years of age and thriving thanks to a clinical trial she underwent and thanks to the care of the staff at Temple Street.
Ava’s Mum noticed that her daughter’s stomach was distended when she was only a few months old,meaning it was slightly swollen and visibly noticeable.
Aoife took her to the doctor one morning, and didn’t see home again for quite some time.
“Everything else was perfect, she was doing very well, sleeping and all that. The tummy was just very distended and she had a pale complexion.
“She didn’t present with the normal characteristics of the condition. She was presenting differently,” Aoife told The Sligo Champion.
She had been preparing to return to work after maternity leave, and after visiting the doctor, they were sent to casualty in Sligo before then being transferred to Dublin.
It was there that the Finn family were told the devastating news, Ava had a rare metabolic condition.
There were only three or four other people in the world with this condition, and she had merely weeks to live.
The family were distraught upon hearing the news. It had all happened so quickly.
“You never imagine it’s going to happen to you in your wildest dreams. You pass the first six months and you think everything is going to be perfect. ‘What can happen’. I didn’t know too many illnesses or anything about metabolics. I was just getting ready to go back to work and all.”
Then, the opportunity of undergoing a clinical trial came along. It was a risk, but one the family felt was worth taking.
With the help of staff at CHI at Temple Street (formerly known as Temple Street Children’s University Hospital), they flew to Manchester to begin Ava’s treatment.
Aoife added: “I had two doctors and nurses with me just to keep her stable. I said, ‘Will we ever seen Ireland together again?’ and they said, ‘We can’t tell you that’. “
David, Ava’s Dad added: “You could visibly see her fading away every few minutes. It was so, so tough.”
“I didn’t want to leave her for a second. You just hug her. You never stop,” said Aoife.
“I was (worried) but it was the only option we had, if we didn’t do it there was no other option. Even during the clinical trial you are worrying because other children had passed away and you don’t know what will happen.
“Behind the scenes our consultant Joanne Hughes was working tirelessly trying to get the drug back to Ireland because it was a trial drug.”
There was good news on the way, though, as Ava had responded well to the treatment.
“Within the first two weeks of the treatment her stomach went down 5cm and her bloods started improving. And then Manchester told us that there would be good news coming and we got transferred to Temple Street.”
That was a huge relief for the family, who were closer to home now and closer to family members too.
“It felt like we had won. Temple Street was the goal we had in sight.
“It was fantastic. You’re so far away and you’re on your own. David was living in the Ronald McDonald housing in Manchester, and I was in the hospital all the time.
“Our families were brilliant for coming over all the time for a few days but they all had commitments here, families and kids and all. So when we got back it was fantastic because we were closer to family.”
Ava had appointments at Temple Street once a week, every week for 52 weeks of the year for five years.
“It’s a team that minds Ava, it’s her consultant, it’s the nurse, it’s the dietician.
“It’s like an extended family. I do know that we are in safe hands” added Aoife.
The drug that Ava needs was licensed last year and she is now able to avail of home treatment, which saves the stress of travelling to Dublin constantly.
“It’s amazing and it makes life so much easier and brings us back to normality. It’s only one day of the week and she’s able to live a normal life, she’s not on the road,” added Aoife.
Ava has dietary requirements and has to be careful to some degree, but her life is much improved since she is able to stay at home.
Aoife praised her school, Holy Family NS in Tubbercurry, for being part of Ava’s support network which allows her to live a normal life.
“She loves school, they’ve been fantastic. They’ve been very accommodating, she’s gone into school with picc lines in. That support too has made life easier for us. When you have support networks it makes life easier.
“Normality is a big help. It helps her life a normal life which is all I want. She goes swimming, she goes to Jiving Junior and
EVERY DAY IS A MIRACLE WITH AVA. ANYTHING THAT SHE DOES IS SO SPECIAL. THEY’RE CHERISHED MOMENTS.
she loves playing with her friends and cousins. Every day is a miracle with Ava.”
David added: “Anything that she does is so, so special. And they’re cherished moments and memories.”
The family will be forever grateful to all at Temple Street who are like ‘a second family’ to the Finns having spent so much time there over the years.
“They’re fantastic. They’re like family. If I have a problem now all I have to do is pick up the phone and there’s two or three people on the other end of the phone to solve the problem. They sort everything.
“When you are dealing with something so rare you don’t know what tomorrow holds, you don’t know what the next week will bring.
“There’s no other patients older than her, she’s the future of this condition. So to have that support is amazing.
“She’s setting the pace for the future and for future kids with this condition coming along. For a seven year old girl to be changing the world, she’s some lady.”
Aoife and David shared Ava’s story as part of Temple Street Foundation’s Living Proof video series, which shows the faces behind some of the stories at the hospital, and the impact of donations on the foundation.
Chief Executive of Temple Street Foundation, which is part of the Children’s Health Foundation, Denise Fitzgerald says, “Ava’s journey has been an immense inspiration to us all, and we are greatly honoured to get to know Ava and her mum and dad over the many years that they have been attending Temple Street.
“We would like to extend our thanks to Ava’s parents, Aoife and David for kindly sharing their story with our supporters through this year’s Living Proof series.
She adds, “Each year Temple Street cares for over 147,000 sick children in the hospital, just like Ava. Temple Street is a building that never sleeps – with the hospital’s world-class team working around the clock to care for children from all over Ireland.
“As part of the Children’s Health Foundation family, Temple Street Foundation exists to support this phenomenal work and your continued support will ensure that sick children and their families will continue to receive the support they need in the days, months and years ahead.”
For more information about the Temple Street Foundation, check out templestreet.ie.