Aussie boy's bucket list dream while battling debilitating and 'isolating' condition
Harlan Atkinson has suffered from 'The Cute Syndrome' his entire life and likely has just a few short years to live.
An Aussie mum has detailed her son's harrowing health journey after learning of his extremely rare life-limiting condition, which tragically means the eight-year-old likely has just a few short years to live.
Harlan Atkinson first began experiencing seizures and unusual medical symptoms at just three months old. But it took five years and an intense "emotional toll" before his parents, Becky, 36, and Jai Jamieson, 34, were given answers.
In 2020, Harlan was diagnosed with SCN8A epilepsy, also known as 'The Cute Syndrome'. His particular variant is so rare it is believed to only affect two other children in the world.
Patients with SCN8A can suffer from a variety of symptoms from medication-resistant epilepsy, developmental delay or limitations and other physical challenges. Tragically, studies on patients with this condition suggest the average life expectancy is just 10 years.
Family's bucket list for sick son
The family is desperate to "make the most of what time we have with him," Becky from Brisbane said and has created a bucket list of dream adventures that they are working their way through to help Harlan live life to the fullest.
This includes experiences such as whale watching, star gazing, camping, seeing snow for the first time and riding a surfboard.
"Harlan’s life expectancy often brings hard conversations to the surface," Becky said. "The toll on our emotions is unmeasurable".
"It can go from breakfast and giggles to intensive care and not really knowing how much time we have left. But at the same time, we know that Harlan loves life and at every opportunity he is smiling, laughing and creating new adventures to take us all on".
'No treatment' available for 'isolating and exhausting' condition
Becky, also mum to three other children with various disabilities, Bella-Marie, 16, Clay, 14 and Rhory, 12, says there is still no targeted treatment or medication available due to little being known about the condition. Becky – who dreamed of working in criminal justice – also gave up her career hopes to become Harlan’s full-time carer. Harlan's condition is extremely "time-consuming" and can be "isolating and exhausting".
"[When he has a life-threatening seizure], we have to breathe for him with the use of oxygen and bag valve mask ventilation, which we carry with us at all times, and he is at high risk for cardiorespiratory arrest, which is fatal without resuscitation," she explained.
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"At times, Jai and I struggle to watch families around us lose their children, knowing it's only a matter of time until we too will have to feel that pain.
"Most nights, I cry and then try to sleep, while simultaneously trying to make the most of every day with a smile".
Family raising money to help Harlan 'life life to the fullest'
Becky and Jai have launched a GoFundMe campaign to raise $50,000 for a wheelchair-accessible van with ramp access and an adaptive special needs chair. It'll also allow their son to travel safely while remaining in his wheelchair, as well as assist in attending vital therapy appointments and weekly medical visits.
Harlan's bucket list is based on places he wants to go and the things he hopes to see. The little boy’s biggest ambition is to visit Disneyland and spend time with friends in the SCN8A community overseas. As well as see his extended family members again, who live in Western Australia.
"We used to live in Western Australia, but we struggled to find anyone professional to invest in what was causing Harlan's symptoms. [As a result], we sold all our possessions and organised another home to live in," Becky explained.
"We felt a lot of grief, as we had to leave our family and support behind, but we kept faith that we would get the help needed.
"Harlan wants to go on a plane for the first time to go home and see his grandparents – it’s been five years since we saw them."
Despite the debilitating condition, "to be his mum is so rewarding," Becky said. "We love him and despite the difficulties, it's our love for one another and our family that keeps us strong."
with JamPress
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