At first glance you might easily think Jayden Raven was like any other child.
But five-year-old Jayden is not like other children. He is, in fact, often very poorly. And every birthday, every Christmas with her son is a milestone for which his mother, Sarah, is grateful.
“When Jayden was born he seemed a healthy baby. But as the months passed he didn’t progress like other babies. And at 10 months old he still wasn’t sitting up,” she explains. At first, experts told her not to worry. But somehow Sarah knew it wasn’t usual. Something with her little boy just ‘didn’t seem right’. In addition to being late with crawling and sitting up, he also seemed to have problems digesting his food. There were frequent sleepless nights.
It was an unexpected hospital visit that was to have a profound effect on the Nottingham family, which includes dad Philip, older son Owen (13) and Lilly (two). A bloodshot eye sustained as Jayden’s face brushed against the carpeted floor while he was attempting to crawl - and a dash to accident and emergency.
Sarah explains: “When Jayden was examined at hospital they were concerned. At first they thought he might have water on the brain… or even that I had shaken him violently. They kept him in overnight. But it wasn’t until a paediatrician tried to sit him up and he fell forward that they decided to examine him thoroughly.”
That led to further tests and finally, a diagnosis. Jayden had Sanfilippo Syndrome, a rare genetic condition, also described as MPS IIIA. Doctors told Sarah her son would never walk, never talk – and that his life expectancy was 12 years. And there is no cure. “It hit me like a hammer blow. Suddenly my worst fears were confirmed. My whole world was shattered,” she says. “I had wanted answers, but had not expected that.” Jayden had just turned one.
Children with the condition cannot produce a certain enzyme needed to break down sugars, which leads to digestive problems. Clear symptoms often only appear after the first year of life, with a deterioration in learning ability often occurring between ages two and six years.
Eating and digesting food is a constant problem, says Sarah. Increasing behavioural problems are also consistent with the condition, along with progressive physical deterioration, including a stiffness in the joints.
The care required for Jayden can be intense – despite unfaltering hands-on support from her mother, Wendy - and has, says Sarah, placed an additional strain on the entire family. Yet, despite the difficulties, which include sight and hearing problems and a fragile immune system, which means every illness can potentially be life-threatening, Jayden is a remarkably smiley and happy child.
“Jayden is like a ray of sunshine,” says Sarah. “He can be brilliant, very loving and affectionate, full of kisses and cuddles. But he can also be a handful… a full-time worry.” Mealtimes can be intense and prolonged, due to the limits on Jayden’s diet and the length of time he needs to eat. Even everyday things like going shopping can become a major challenge.
“Jayden does not like a lot of things,” she says. “Loudness, crowded places… things which are unfamiliar to him.” And he may show his distress, often drawing disapproving stares. People don’t understand. When even the simplest, everyday activities can become an ordeal, it can be stressful, and lead to avoidance, isolation and lack of confidence, even depression.
The family first visited Rainbows when Jayden was two, following a referral by the portage worker who was supporting the toddler. At first it was difficult for Sarah to leave her son in anybody’s care, she admits. “You become overprotective. I found it difficult to trust anyone to look after him. But now I have every confidence in the care staff here – they are brilliant! And Rainbows has become like a breath of fresh air – it allows me to breathe!”
Rainbows typically offers families 16 days respite every year, with some families choosing to stay in rooms directly above the hospice while their youngsters are cared for, free to come and go as they wish. They can spend as much, or as little time with their children as they would like, knowing they will be cared for by the highest level of care specialists.
All family members are encouraged to enjoy the facilities too during their stay, including a range of play activities for siblings, therapies and a hydro pool. “Jayden loves the pool!”
“Rainbows has made all the difference, not just for Jayden, but the whole family.
“It is a magical place. The care for Jayden is second to none – and when we come we can relax and step away from the everyday stresses we normally have. To be honest, when I am at Rainbows I feel able to relax in a way that I can’t anywhere else!”
Here she says the family feels accepted. Normal. Loved. “We’ve even met families here at Rainbows with children who have the same condition as Jayden. It makes us feel we are not alone. The support from Rainbows is incredible. Even when we are not staying, we have regular visits and phone calls from family support staff.”
Jayden took his first steps at the age of three years, against all expectation. And he is still walking, though it may be difficult and sometimes painful for him. As Sarah knows, there are many trials ahead and every small step is a minor miracle; every happy day with Jayden a blessing. And Rainbows helps make those days possible, she says.
Jayden’s future is uncertain, she knows. But, she adds: “He has come to love Rainbows, as we all have. It is a haven; a place of comfort and support. I try not to think of the future. It scares me. But whatever it holds, I do know it is a little bit brighter with Rainbows.”