Boy, 8, with extremely rare strain of condition that affects TWO people in the world dreams of completing bucket list of adventures
A mum has shared the harrowing journey of her eight-year-old son’s extremely rare life-limiting condition – and his bucket list of adventures to experience before his untimely death.
Harlan Atkinson first began experiencing seizures and unusual medical symptoms when just three months old.
It would take five years and an intense “emotional toll” before his parents, Becky, 36, and Jai Jamieson, 34, would be given answers to what was going on.
The couple, who also have three other children with various disabilities, Bella-Marie, 16, Clay, 14 and Rhory, 12, even sold their belongings and moved to another state to get medical assistance for their son.
In 2020, Harlan was diagnosed with SCN8A, also known as ‘The Cute Syndrome’ – his particular variant is so rare it is believed to only affect two other children in the world.
Tragically, studies on patients with this condition suggest the average life expectancy is just 10 years. “We want to make the most of what time we have with him,” Becky, from Brisbane, Australia, told Jam Prime.
“Harlan’s life expectancy often brings hard conversations to the surface. “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.
“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.
“He teaches us to feel what he is going through – strength, resilience and empathy.” Patients with SCN8A can suffer with a variety of symptoms from medication-resistant epilepsy, developmental delay or limitations and other physical challenges.
At the time of Harlan’s diagnosis, the family claim there were only five cases in Australia. They say there is still no targeted treatment or medication available due to little being known about the condition.
They also struggled with carer support, which saw Becky – who dreamed of working in criminal justice – give up her career hopes to become Harlan’s full-time carer.
Jai works for the department of corrections to support the family financially while doing as much as possible to help out at home. Their three other children also suffer from a range of disabilities.
Becky said: “Being Harlan’s full-time carer is so time-consuming it can leave me unable to complete the smallest of tasks some days, even just answering emails. “[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.
“Something that sticks with me is the gentle chatter between other parents when they speak about the immense peace they feel when watching their little ones sleeping. “I am robbed of that – our bedtimes involve making sure I say ‘I love you’ enough and take in the smell of his hair, the feel of his little hand in mine, in case I don’t get that privilege again the next night.
“Most nights, I cry and then try to sleep, while simultaneously trying to make the most of every day with a smile. “At times like this, of course, it’s very difficult for myself and Jai to function as husband and wife harmoniously. “There is so much stress and decision-making to be done, that you sometimes forget that you’re fighting for the same thing.
“But we’re together and giving whatever we have left to one another – at the end of it all, we love each other and Harlan, which keeps us going.”
In an effort to stay positive, the family have 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 going whale watching, star gazing, camping, seeing snow for the first time and riding a surfboard. Becky says the list is based on the stories which Harlan tells them about the places he wants to go and the things he hopes to see.
The little boy’s biggest ambition however is visiting Disneyland and spending time with friends in the SCN8A community overseas, as well as see his extended family members again, who live in Western Australia. But this can be a tough task as when travelling, the family is forced to bring a resuscitation kit and other medical equipment weighing between 30-40 kilograms in case of an emergency or seizure.
They also need to transport Harlan safely in a modified special needs wheelchair, which requires a certain altered car. Becky said: “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. “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. “Due to medical conditions, my dad, who lives in another state, can’t fly to us. “We also want to spend more time outdoors such as for beach and bush walks, but we don’t currently have an accessible push chair for this type of terrain.” Becky and Jai have launched a GoFundMe campaign to raise $50,000 (£39,830) for a wheelchair-accessible van with ramp access and an adaptive special needs chair.
This would allow their son to travel safely while remaining in his wheelchair, as well as assist in attending vital therapy appointments and weekly medical visits. They have raised $1,085 so far.
Becky said: “For starters, it would mean we can leave the house safely with him. ”That allows us in a medical emergency to have him in a position where it‘s safe to perform CPR, resuscitation and we can wheel him in and out in that van.”
Becky says life can be “isolating and exhausting” but she finds comfort in her love for her son, as well as support from The Carers Foundation, founded by Ronnie Benbow, which has assisted her in coping with carer duties.
She said: “It’s a non-negotiable for carers like myself to have access to services that allow them to maintain basic self-care and restoration. “We need access to what Ronnie and her team provide to be funded, supported, made readily available, to be valued and acknowledged by those in a position of power and responsibility to do so.
“Dealing with Harlan’s condition can be isolating, debilitating and exhausting – but to be his mum is so rewarding. “We love him and despite the difficulties, it’s our love for one another and our family that keeps us strong.”
