A dedicated dad is training for an Ironman contest in a bid to put his four-year-old son’s rare condition on the map.
Young Juul has Angelman syndrome, a rare condition that was first called the Happy Puppet Syndrome.
The genetic disorder hits about one in 15,000.
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There are thought to be 500,000 people with it worldwide.
Juul, who cannot talk, lives with his family in Zwalm, Belgium.
The youngster, who also has epilepsy, will never live independently.
He does not produce a sleep hormone, so nights are broken.
Dad Benjamin Vande Casteele, 33, and mum Sylvie Libert, 30, said they are not sure how much he really understands.
Juul walks with splints, which doctors did not expect and communicates without words and loves to cuddle.
Benjamin told Need To Know: “Juul was diagnosed with Angelman syndrome at UZ Ghent University Hospital in Ghent in June 2024.
“It’s a rare genetic neurological disorder that affects around 1 in 15,000 to 20,000 children.
“It causes significant developmental delays and affects movement, speech, communication and coordination.
“Many children with Angelman syndrome also develop epilepsy and severe sleep problems.
“He will never say mama or papa.”
He added: “When Juul is happy, he is extremely happy.”
Brother Oscar, 7, is devoted to his younger sibling.
Benjamin said: “He would drop all his football training if his little brother is ill.
“But we still want him to be a child.”
The dad has been running marathons in a homemade Angelman T-shirt.
He also plans to take part in an Ironman contest in France to raise awareness about the condition.
He said he chose endurance sport because Juul will never get that chance.
The syndrome was first described in 1965 by Liverpool paediatrician Harry Angelman.
He first called it Happy Puppet Syndrome after a painting of a boy with a puppet.
Symptoms include bursts of laughter, severe learning disability, epilepsy, poor balance and sleep trouble.
Benjamin, who works in the automotive industry, said: “We still don’t know how far he will eventually develop or whether he will ever be able to walk independently.
“Sleep is also a major challenge for Juul.
“He does not produce melatonin normally, which makes sleeping through the night extremely difficult.
“This has a significant impact not only on him, but on our whole family.”
Benjamin said they first started noticing that something was different when Juul was around six or seven months old.
Other babies his age were starting to roll over and sit up, while Juul wasn’t reaching those milestones at all.
The father said: “We were repeatedly sent home because his reflexes and the other examinations were completely normal.
“We were always told to give him more time.
“When Juul was around one year old, we asked for a DNA test because his development simply wasn’t progressing.
“As parents, you know your child, and we had a strong feeling that there was something more going on.
“After the DNA test led to the Angelman diagnosis, our medical journey became much broader.
“Angelman syndrome is not a newly discovered condition, but because it is so rare, awareness among general healthcare professionals can be limited.”
He added: “Juul has since been followed by a whole range of specialists, including neurologists, a sleep specialist, an epilepsy specialist, an ophthalmologist and a cardiologist.”
Benjamin also spoke about the impact it has on the family.
“As a parent, you naturally want your child to have every opportunity in life,” he said.
“And with Juul, we simply don’t know what his future will look like.
“At the same time, Juul has taught us to celebrate things that other parents might take for granted.
“When he takes a new step forward, it means the world to us.
“At the moment, Juul is doing relatively well, although he faces significant challenges every day.
“He had a very difficult period last winter when he was hospitalised because of severe epileptic seizures.
“His medication has since been adjusted and, fortunately, his epilepsy now seems to be under control.
“But sleep remains a major challenge.
“As a family, we have to work with a schedule to divide the nights between us.
“This remains very demanding, especially because my wife also works full-time as a self-employed home nurse.
“Despite all of this, Juul continues to make progress.
“He has recently started taking his first independent steps, which is an enormous milestone for him.”
Benjamin said his son is an “incredibly happy and resilient little boy” with a huge smile and a personality that “lights up a room”.
“He is almost always laughing, despite everything he has to deal with.
“He cannot speak, but he communicates in his own way and has a very strong personality.
“He keeps trying, and that determination inspires our entire family.”
Benjamin said he wants to spread awareness about Angelman syndrome.
“If more people knew about it, perhaps other parents would recognise the signs earlier and know where to turn for help.
“I also believe there should be more awareness and, in the future, better opportunities to identify genetic conditions such as Angelman syndrome during pregnancy, so parents can be better prepared.
“Of course, no parent wants to hear that their child may have a rare genetic disorder, but I believe that having knowledge and being prepared is better than being completely blindsided after your child is born.
“Most importantly, I want people to understand what Angelman syndrome actually means.
“Juul is not just a diagnosis. He is a happy, loving little boy with his own personality.
“If telling our story means that even one more family hears about the syndrome, recognises the signs earlier or simply understands the condition a little better, then it is worth doing.”
He added: “And on a personal note, that is also why I will be taking on the Ironman in Vichy.
“It is my way of turning everything we are going through into something positive.
“I want to raise awareness, give meaning to the fight, and show Juul that we will always keep striving for him.”
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