Family’s joy and pain as little Kyran defies the odds battling Infantile Krabbe Disease

Told their little boy likely wouldn’t live past his first birthday, five-year-old Kyran has defied the odds. But his family know he’s just ‘one hospital stop away from the end’ as he battles a rare genetic disorder.

Kyran Dunlop is a five year old in a newborn’s body.

He can’t speak, walk or hold up his head, and his eyes have been shut for most of his young life.

Suffering a rare genetic disorder, Kyran was not expected to make his first birthday but he is “just a little trooper”, according to doting mother Carissa Dunlop.

“But it’s bittersweet,” said Mrs Dunlop, 48, who has three older children.

“It’s amazing we’ve had this extra time with our miracle baby, and I want to remember every single moment, you try to absorb everything, but doom is waiting.

“We are always one hospital stop away from the end.”

At nine months, Kyran was diagnosed with Infantile Krabbe Disease, an incurable disorder that destroys the nervous system.

It is rare because both parents must have the same gene mutation of chromosome 14 for it to occur.

One in four of their children will be afflicted.

“My husband Cole and I were actually asked if we were brother and sister, because it runs in families,” said Mrs Dunlop, managing to laugh at what was a confronting question at the time.

“Seriously though, what are the chances we’d meet up and get married?”

Five-year-old Kyran Dunlop with his family (left to right) Grace (age 10), Carissa, Tenae (age 8) and Cole. Picture: Richard Walker

In Australia, there are fewer than 20 cases of Krabbe in children and the average life expectancy is two years.

Prognosis is improved for newborns who receive umbilical cord blood stem cells, however, Krabbe is not included in Australia’s bloodspot screening program, despite it being offered in parts of the US.

Bone marrow transplantation within the first 10 weeks may also prolong a baby’s life.

In Kyran’s case, diagnosis came relatively late, shortening his predicted survival to 12 months.

More than four incredible years on, Mrs Dunlop recalls with aching clarity the moment she and Cole, 38, were told the devastating news.

The Narangba couple was called to a family meeting with specialists at the Queensland Children’s Hospital (then Lady Cilento) in August 2017.

Kyran Dunlop pictured at seven months with sisters Grace and Tenae. Pic supplied.

“I was sick with worry but when they said it was Krabbe and Kyran would likely be dead in three months, it was terrible, the worst thing we could have imagined,” said Mrs Dunlop, who’d never heard of the disease.

“Goodness, I was in floods of tears and could barely speak.

“For weeks after I cried every single day but then I said to myself, ‘I can’t waste Kyran’s life by curling up in a ball’, so we thought about how we could make his, ours and our girls’ life good.”

The Dunlops were offered the choice of Kyran having a bone-marrow transplant, which would require two months in hospital and not guarantee him any extra time.

“We decided we just wanted to live, to have him home and make memories,” Mrs Dunlop said.

“I have three daughters – Grace (now 9), Tenae (8) and Tamieka (27, from a previous relationship) – and the girls needed their mum too.

“Cole stopped his job as an interstate truck driver and we settled into a routine of around-the-clock medications.

“Our boy would be in absolute agony without them; the pain would kill him.”

Kyran on his fifth birthday with dad Cole, mum Carissa and sisters Tenae and Grace.

Kyran was placed in the hospital’s Paediatric Palliative Care Service, which provides 24/7 support so patients and their families can achieve the best quality of life.

Service director Anthony Herbert said Kyran had “surprised us all”.

“You can’t sugar coat the fact children are dying, but it’s a question of how do we provide the right care and tell the truth with kindness,” Dr Herbert said.

“The take home message is time is precious, and the Dunlop family is making the most of that time; they go on camping holidays and Kyran does amazing things despite his condition, achieving mini-miracles along the way.”

Dr Herbert said Kyran’s survival was testament to the power of synergy between medical expertise and parental know-how.

“Kyran has a wonderful quality of life; he is non-verbal and we rely on his parents to make the best decisions, as any parent would, and Carissa is truly making decisions from Kyran’s point of view rather than her own.”

Dr Herbert said Kyran’s case was “especially complex” because the child required a range of specialities, including metabolic, neurological, immunological and dermatological plus allied health services.

Kyran hasn’t eaten solids since he was 18 months old, feeding through a tube in his stomach. Picture: Richard Walker

Kyran is on a permanent oxygen supply and has numerous allergies and respiratory troubles.

He cannot swallow properly and hasn’t eaten solids since he was 18 months old, feeding through a tube in his stomach.

To the delight of his family, he has recently started opening his eyes again.

“He tracks us as we walk around the house and just adores his sisters,” Mrs Dunlop said.

“They love reading to him and we know he can hear us.”

When Kyran began having serious feeding issues and became lethargic from around four months of age, Mrs Dunlop was told it was probably because he was a boy and had delayed development.

“I’d only had girls, so didn’t think much of it at first but he became so irritable he was on fire and I couldn’t put him down,” she said.

At six months, Kyran had an anaphylactic reaction to yoghurt and was rushed to Caboolture Hospital.

He was then referred to the Child Development Service at North Lakes where his lack of weight gain – only 10 grams between seven and eight months of age – signalled other issues and admission to Caboolture Hospital.

There the family met paediatrician Dr Manuel Bautista Morales, whom Mrs Dunlop describes as “brilliant”.

“He took us under his wing and sent us to the children’s hospital where we could get the correct bloods and MRI testing,” she said.

“Dr Manny and all the palliative care team say we’re doing so well because of the love we give Kyran, which is true, but there’s something in Kyran that keeps him fighting.

“He might be a five year old in a newborn’s body but he is our miracle.”