We just want to take our baby home: The rare syndrome keeping four-month-old Jasper in hospital

Four-month-old baby Jasper Lyon has the extremely rare Costello Syndrome.
Four-month-old baby Jasper Lyon has the extremely rare Costello Syndrome.  Photo: Max Mason-Hubers

Baby Jasper Lyon is snuggled up in his hospital bed guarded by a multi-coloured zoo of toys. His dad, Matt, plants a tender kiss on his cheek and softly strokes his head.

"It chokes me up how I'll never get Jasper's birth back again," he says. "I'll always remember it as traumatic and scary. When he came out, he was blue and not breathing with his legs over his head. We didn't know if he was going to die."

The four months since Jasper's frightening birth on March 15 have been every parents' nightmare for Mr Lyon and his wife, Sas, from Port Macquarie, with their little boy spending only four days of his life at home.

Jasper with his mother Sas, father Matt and sister Darling, 5, at Newcastle's John Hunter Children's Hospital.
Jasper with his mother Sas, father Matt and sister Darling, 5, at Newcastle's John Hunter Children's Hospital. Photo: Max Mason-Hubers

After being flown to Paediatric Intensive Care Unit at John Hospital in Newcastle shortly after his birth, the baby boy spent two weeks in Neo-Natal Intensive Care before he was allowed home. But the reprieve was short-lived. Jasper suffered seizures at home, including one so severe he stopped breathing and had to be resuscitated by his mother. He was taken back to John Hunter, where he has remained ever since. 

Thanks to the work of the geneticist Associate Professor Matt Edwards, Jasper was diagnosed with a rare mutation of Costello Syndrome - a genetic disorder characterised by delayed development and intellectual disabilities that affects every single cell in Jasper's body. There are only 200 people in the world diagnosed with Costello Syndrome and there is only one other child, a boy in the UK, known to have the same mutation of the syndrome as Jasper.

In addition, Jasper has been diagnosed with a form of epilepsy known as SCN1A. He is the only child known to have a diagnosis of Costello Syndrome and SCN1A, making his treatment a challenge for doctors and his future needs and outcomes hard to predict. 

The family is now reliant on funding from the National Disability Insurance Scheme in order to take their baby boy home, given his complex needs for equipment and care. Mr and Mrs Lyon suffered a setback in that process last week. After submitting their application for eligibility early this month, they received a letter asking the couple to provide further evidence of their son's disability before funding could be considered. Last week, following inquiries from Essential Baby, the family received a phone call saying Jasper's eligibility had now been approved.

"This is just the first step in the process, next we have to have to have a planning meeting then go through the process of finding out which things we can and cannot claim," Ms Lyon says.

"The process with the NDIS is so slow and because Jasper's condition is so uniquely rare and his future progression uncertain, it could take longer. 

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"It's the awful situation where the rarer the condition, the more need there is for help, but the longer the approval process takes because there is no precedent to follow.

"Some of the outcomes for Costello Syndrome can be life-limiting so we just want be home together as a family as soon as we can."

A spokesperson for the National Disability Insurance Agency denied the application process was any different for rare conditions. 

"Access to the NDIS is based on a person's functional impairment, not on their condition or diagnosis," their statement reads. 

Mrs Lyon currently sleeps on a bed in Jasper's hospital room. Her nights are filled with the constant coming and going of staff and an orchestra of beeping machines. Her "office" is a small space in the corner of the room where she keeps herself busy with work. Her husband flies down from Port Macquarie as regularly as he can and Mrs Lyon's dad, makes the trip down twice a week. Jasper's five-year-old sister, Darling, has joined her mum and brother for much of the school holidays. 

While Darling has always been a resilient child, she is beginning to show the strain brought on by her brother's hospital stay and her mother's absence.

"Darling has been so good and we're so proud of her, but this is starting to take its toll on her too," Mr Lyon says. "She's become clingier and more unsure about things, and we're mindful of that."

Mrs Lyon attributes a lot of her own strength to the hospital staff who have become like extended family. In the face of an unknown condition, she credits them with dedication, professionalism and unrelenting kindness.

"They kept Jasper alive every day when he could have died," she says. "They overcame the primary issues linked to failure to thrive and his long-term outlook is a million times better than it would have been otherwise. He couldn't have been a luckier unlucky baby!"

Mrs Lyon notes the cost of Jasper's hospital stay for the healthcare system and others is beyond financial.

"We don't want to be a burden on the hospital, and we don't want anyone else's funding," she says. "We know that once Jasper is stabilised, we can have him home with the right care and support and our beds can be freed up for other families."

Mr Lyon explains that, despite the difficulties ahead, they do not wish Jasper was any different.

"We don't wish that Jasper was born differently or that he was born without a syndrome," he says. "We're sad for him that he'll have intellectual delays and we're sad for him that he won't experience certain things, but he'll have a life of joy because that's what we'll give him.

"Our biggest hope right now is that Jasper's safe and we can use every possible avenue to shine a light on what it takes to get him home."

Anybody wanting to help baby Jasper and his family can donate here: https://www.gofundme.com/f/jasper-lyon