Áine's Journey
‘’When my baby daughter was diagnosed with a rare medical condition, I didn’t know what to do. I’m so thankful that kind people who donate to Children’s Health Foundation were there to support my family, every step of the way.’’
– Sara, Áine’s Mum.
Áine and Katie
Áine and her twin sister Katie were just over four-weeks-old, when the Public Health Nurse said she was concerned they weren’t putting on enough weight. She referred them for some tests, and before long they were in Children’s Health Ireland at Temple Street. Sara and Stephen, Aine and Katie’s parents, were eventually able to take Katie home, but as the Temple Street doctors did more tests on Áine and spent more time with her, they became more and more concerned. It was such an uncertain time for Sara and Stephen.
Sara recalls, ‘’here we were, trying to enjoy those early weeks of parenthood, with our two gorgeous new girls, but there was a shadow over all of it.’’
‘’I can’t give enough credit to all the doctors, nurses, consultants – everybody that worked on Áine’s care. I never come across anybody that I didn’t like, with each new person I met, I thought, ‘You’re really good at this job, you were made for this job.’’
Diagnosis
After a number of tests in Temple Street, Áine was diagnosed with a rare condition called ‘osteopetrosis’ which also goes by the name ‘stone bone’. It means that as she grows new bone cells, the old ones don’t break down as they should so overtime her bones become thicker and thicker.
For Áine’s parents, it was devastating news to hear but once they had processed the shock the medical teams in both Children’s Health Ireland at Crumlin and Temple Street swung into gear and began working flat out to help their little girl.
108 Days in Children's Health Ireland at Temple Street and Crumlin
Áine’s mom Sara recounts how the medical teams in both Crumlin and Temple Street were so dedicated and professional, “it felt so reassuring to be working with them. It’s very disconcerting to be handing your sick child over to someone else, but I always knew Áine was in safe hands.”
“This whole period was a blur of tests and hospital stays, surgeries and procedures, complications and delays. Poor wee Áine had all sorts of issues – her skull was thickening so her head was swelling, which caused serious damage to her vision. She had hydrocephalus, which is fluid on the brain. At one point I was even told she needed chemotherapy, which floored me. ‘She doesn’t have cancer!’ I said, but they explained to me that chemo has other uses. Through all this, Sara says that Áine stayed “such a happy little thing”. While her family around her felt the stress and fear of everything that was going on, Áine never picked up on any of it.”
During this turbulent time, one thing that helped massively was that Áine had play specialists who came in to see her every day. Sara recalls, “it made a huge difference to have that as a form of distraction, as something to look forward to and lift Áine’s spirits.” Not only that, but there were also music therapists, physios, complementary therapists – so many different teams and services, many of them funded through the kindness of our supporters – people just like you – all working together to help her.
Amazingly, a bone marrow donor was found for Áine – a woman in Germany, one of only two matches in the entire world. Áine was transferred from Temple Street to CHI at Crumlin where she received her bone marrow transplant on 8th July 2021, at just 14-months-old. Once she’d recovered, she was finally allowed to go home. Reunited at last with her twin sister Katie, her 108 days in hospital were at an end.
Since then, Sara says it’s been anything but plain sailing for Áine (more complications, more surgeries) and the future is still uncertain. But, Sara says, “our journey is not over yet, but we’re living each extra day as a bonus, as a gift.”
Please donate today and give the same precious gift of comfort and hope to other families with sick children in Children’s Health Ireland at Temple Street and Crumlin right now.
May 2020: Áine and her twin sister Katie are born.
June 2020: Neither twin is putting on weight. They are sent to CHI at Temple Street. Áine is kept in for nine days.
Oct 2020: Áine has ultrasounds on her spleen, kidney and cranium. Her spleen appears enlarged.
Dec 2020: Áine and her family meet an endocrinologist, who tells them she may have rickets.
Jan 2021: Áine is back in Temple Street for an X-ray and blood test. Doctors suspect she could have a form of osteopetrosis – a thickening of the bones.
Feb 2021: Áine loses vision in her left eye due to bone thickening in skull.
March 2021: Tests confirm Áine has autosomal recessive infantile osteopetrosis.
April 2021: At Temple Street, Áine has a shunt (to drain fluid from her brain) and Hickman line (for administering chemotherapy) put in. She has a bad reaction to the shunt, so is given a blood transfusion and spends three days in hospital.
May 2021: Due to an infection in the Hickman line she develops sepsis and ends up in ICU. Áine stays in hospital now and is transferred to St John’s Ward in CHI at Crumlin.
June 2021: Áine begins 10 days of chemotherapy in preparation for transplant.
July 2021: Áine receives a bone marrow transplant.
Oct 2021: After 108 days Áine finally leaves hospital.