When Samson wants to make himself laugh, he has a little trick: he tries to laugh into a microphone held near his mouth.
It is one of the many things his mother loves about the six-year-old, who fills their home with laughter despite the medical challenges that have shaped much of his young life.
“He laughs a lot! Sometimes the funniest little noise will make him laugh,” she says. “He loves music, swinging, spinning and rough play, but most of all, he loves eating and training with me.”
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Samson is nonverbal and lives with Angelman syndrome, a rare genetic condition that affects development, movement and communication.
He has endured seizures, serious respiratory complications and 25 hospital stays. Yet his mother wants people to see the little boy behind the diagnosis as a playful child, a beloved son and Seren’s younger brother.
To tell his story, she is preparing to ride 150 km by camel across the UAE desert over 15 days in a challenge called Carried Through the Sand 15 Days for Chromosome 15.
The initiative is named after chromosome 15, where Samson has a large genetic deletion associated with his condition. Each day of the journey offers a chance to share a different aspect of life with Angelman syndrome, from diagnosis and seizures to communication, development, and inclusion.
“I want people to meet the adorable little boy behind the diagnosis,” she says. “I want people to see the love and playfulness he brings into our family.”
‘Everything felt unknown'
The first signs that Samson was developing differently appeared when he was five months old. He struggled with tummy time and sitting and didn't reach out to grab things. He eventually sat independently at around 18 months and began crawling at two and a half.
Genetic testing confirmed his diagnosis on October 12, 2020, when he was just 10 months old.
“I had never heard of Angelman syndrome before,” his mother says. “Suddenly, there was so much information about the difficulties he might face, and it was frightening to think about his future. Everything felt unknown.”
The diagnosis brought questions about what Samson might be able to do, the medical challenges he could face, and what his future would look like.
But amid the uncertainty, one thing remained clear.
“Samson was still Samson, the same little boy I loved with all my heart,” she says. “The diagnosis helped explain his needs, but it could not tell me everything about the person he would become or the possibilities ahead.”
Her faith became an important source of strength. That belief was tested when doctors warned that Samson might never walk.
After years of practice, patience, and determination, he eventually took his first steps. His mother had made him a promise: if he learned to walk, she would learn to walk on her hands.
“If you learn to walk, I will learn to walk on my hands,” she had told him.
She kept her word and learned to walk on her hands.
“His steps meant so much because I knew what had gone into them,” she says. “They represented years of effort, patience, and trying again. They reminded me to leave room for possibility, even when the future is uncertain.”
A month in intensive care
Samson’s milestones have come alongside serious medical challenges. He has had 25 hospital stays, including a month in intensive care following aspiration pneumonia. His mother says she had not realised he was aspirating breast milk into his lungs.
Since then, respiratory infections have been particularly difficult, with even a common cold sometimes leaving him needing oxygen support.
There was one night in intensive care when the possibility of losing her son changed how she viewed everything else.
“All the fears about his future limitations faded into the background,” she says. “I just wanted him home, in my arms, safe and well.”
The experience brought her back to what mattered most: having Samson with her.
Raising him while working and caring for his older sister, Seren, means balancing complex medical needs with the everyday responsibilities of family life. She wants both children to feel loved, supported and able to enjoy their childhoods.
Learning to measure progress differently
As a fitness coach and athlete, Samson’s mother was accustomed to measuring progress through strength, speed and competition results. Her son has taught her to recognise achievements that might otherwise go unnoticed.
“Opening a tap, turning a door handle or taking a step can be an enormous achievement,” she says. “Something that looks small to someone else can be a victory in our home.”
Although Samson is nonverbal, he communicates through his expressions, sounds, movements, and reactions. His mother has learned to give him time to process what is happening around him, particularly because of his vision and processing difficulties.
“Being nonverbal does not mean a child has nothing to say,” she says. “Samson has preferences, feelings and a personality. He deserves to be spoken to, included and given time to respond.”
She hopes people in the UAE will become more aware of the everyday adjustments that can help children with disabilities participate in activities alongside their peers and siblings.
Sometimes, inclusion begins with a simple question: “What would help Samson join in?”
Why take on 150km in the desert?
The idea for the camel challenge grew from a desire to turn her love for Samson into something that could help other families.
She joined a camel caravan in 2017 and spent 10 days camping in the desert. Returning almost a decade later, this time as a mother raising a child with complex medical needs, gives the journey a deeply personal meaning.
The challenge will cover 150km over 15 days, averaging around 10km daily. Each day will focus on a different aspect of Angelman syndrome, with videos and photographs showing both the difficult realities and the joyful moments of Samson’s life.
“I wanted to do something that would catch people’s attention and encourage them to stay long enough to learn about Samson and Angelman syndrome,” she says.
Her hopes extend beyond raising awareness. Through the Foundation for Angelman Syndrome Therapeutics (FAST), she has found a wider community of families and people working towards a better future for those living with the condition.
She hopes the campaign will encourage greater interest in research, more opportunities for UAE-based clinicians and geneticists to contribute to studies, and eventually better access to clinical trials for families in the country.
Just as importantly, she wants people to reconsider how they respond to children with disabilities.
“I would love someone who follows the journey to become more patient, include a child they might previously have overlooked, or offer practical support to a family,” she says.
More than a diagnosis
For all the hospital admissions, sleepless nights and uncertainty, Samson’s mother does not want hardship to define their family’s story.
She wants people to see him laughing during rough play, enjoying music and sharing moments with Seren. One memory she treasures is her daughter taking part in a mallathon with Samson, reflecting their bond.
She also wants to show the realities behind a happy photograph: medical emergencies, careful planning, and the repetition involved in helping Samson learn new skills.
“People may see how much time, energy and effort I give to Samson, but the truth is that I feel he gives me so much more in return,” she says.
His unconditional love has changed how she understands success and what deserves her attention.
“Samson doesn’t measure me by what I achieve. He wants me to be present to give him love and receive his love.”
For parents who have just received an Angelman syndrome diagnosis, she offers the reassurance she wishes every family could hear.
“Your child is still your child, the same person you loved before you heard the name of the diagnosis.”
There will be difficult days, she says, but there can also be laughter, love and achievements that once seemed impossible.
“Our life contains both. There is hardship, but also laughter, connection, and so much love. I want to be honest about all of it.”
As she prepares to cross the desert, she hopes people will remember more than the distance travelled or the condition that inspired the challenge.