The inspirational story of Eiden McDowell, a ten year old from Bournemouth, who has a life limiting condition and whose sister Katinka, now thirteen, wrote an incredibly powerful song about entitled ‘Tears’ when she was just 11. This has now been recorded and is available on YouTube, with music created by Matt Black. Eiden McDowell gets respite care at Julia’s House, since he was diagnosed with a very rare condition that only one in seven people have ever suffered from worldwide. He weighs as much as a toddler and has bones so fragile they could break from a gentle hug – because of this extremely rare illness: Galactosyltransferase syndrome which affects how cells are structured. Even the common cold could be fatal for Eiden because of his weak immunity. He has had to be tube-fed since birth and weighs the same as a toddler. Katinka has very movingly put into words his story and how he is an angel and a blessing to her.

This song can be listened to on the following youtube link: https://youtu.be/12lqmeQ8VgE

Eiden had to be resuscitated at birth, before being taken to the neo-natal intensive care unit. The next day, his mother, Sasha, 42, was given a list of health problems her son had been born with – including the condition that means his cells don’t properly form or have a weak structure and that in turn affects every organ in his body. 

Eiden also had a cleft palate and numerous dysmorphic features – and his bones are so fragile, they could crumble if he’s hugged. He is thought to be the only person in the world currently, to be suffering with this particular strand of the disease.

Sasha says her children are a blessing and that her youngest Eiden is a ‘one in a billion boy’, adding: ‘He’s taught us what unconditional love is and while this isn’t the life I planned I wouldn’t change a thing.

‘We call his disease Eiden’s Syndrome because as far as we can tell he is the only person currently alive in the world with this particular strand.

‘It’s a miracle he is alive and we treat every day as blessing,’ says Sasha who gave up work to care for he son.

Because ‘Eiden’s Syndrome’ – a sub type of a rare genetic condition called Ehlers-Danlos syndrome – affects each of his cells his ability to grow is limited leaving the ten-year-old far smaller than his peers. He also has global developmental delay and cognitively remains a toddler. ‘He is small but keeps us all on our toes. His size means Eiden is probably the tiniest ten-year-old in Britain as well.’

It isn’t just Eiden’s size that is affected by his condition with a common cold or infection proving life threatening as his body stops producing certain white blood cells. 

Eiden is on morphine daily because a simple knock or a hug that is a little too hard could break his tiny bones.

Eiden’s father Simon Gillings, 44, said: ‘Brittle bone disease affects all his body because his cells simply don’t grow like ours do. 

‘He is such a stoic little chap though and rarely moans. We know if he does cry then it must be serious.’

Sasha added: ‘We’ve all gotten used to the fact a hug could hurt and his sister, his dad and I as well as his carers know just how much pressure to apply. 

‘Eiden is the one we are all in awe of because despite suffering so many fractures he still wants to try to walk or have a go at things which given the circumstances many people would shy away from. ‘Eiden had 42 emergency admissions to hospital in his first two years and to date that number is past 100.

He has also been treated for eight spinal fractures, as well as foot, femur finger and rib breaks.

The tiny seven-year-old has been tube-fed since he was born. This means he has never had real food simply because his body cannot digest it properly.  

Sasha said: ‘We occasionally put a small lick of a food on his tongue and that gets a smile. He still enjoys dinner time though sitting with us. 

‘He has a gastrostomy tube which pumps food into his body via his stomach 19 hours a day, however because his skin breaks down easily we often have to feed him via an NG tube in his nose.’

When Sasha was pregnant with Eiden she underwent tests for Downs Syndrome, Edwards and Pataus. The tests came back clear.

The mother of two added: ‘So when Eiden was born it was a surprise he came out very swollen and looked a little like an frog and naturally we were concerned. He was taken to the NICU and was there for three weeks.

‘Initially we were told it was a genetic disorder and of course, I blamed myself. But after the first year it became clear getting an accurate diagnosis was going to be harder than we thought.’

‘You naturally assume you will be told what is wrong with your child. You never think that your child’s condition or illness may be new or undocumented. 

‘Eiden underwent dozens of tests and it was another four years before we finally got our diagnosis. To actually have a name for what has caused this has been amazing.’

According to Sasha the diagnosis came about because she managed to get Eiden on a genetic study after SWAN (Syndrome without a name) UK, a charity which helps families and children born with disorders or illnesses that have no name, alerted her to the fact studies were on going globally.

‘I asked our geneticist, did some research and identified possible research. The study identified the syndrome’s name. It was then we realized he was a one in a billion boy,’ she added.

The family learnt that both Sasha and Simon were carriers of the same gene but their individual genes each had a different fault leading Eiden to develop the condition. 

Speaking of the charity Sasha said: ‘SWAN has been amazing. They supported us and understood our frustration at not having a diagnosis and provided us with options to get one. 

‘There are hundreds of children in Britain who have diseases with no name and we’re going public with Eiden’s story to help raise awareness about his syndrome but to also tell people about Swan UK and the brave families and children they help.’

In fact Sasha is so committed to helping the charity that when she isn’t caring for her son and daughter she has enrolled back at university to complete her Masters in Genomic Medicine so she can help SWAN with fundraising and organisation.

‘I feel it is so important to give back to a group which helped us. Even with the internet in today’s day and age, so many kids and families are still searching for answers to what ails their children. We have lived it with Eiden and I want to help others.’

‘I won’t lie it has been tough. His dad and I broke up in the first year, but we are still best of friends and he is always around here helping out. Separation and Eiden has helped us as parents put Eiden first and we’re the better for it’ she said.

Sasha herself suffers from an autoimmune disease and ongoing failed back surgery issues.

Eiden goes to a special school and his family ensures he has as many experiences a normal seven year old would have

‘I put my problems at the back of the queue. My kids come first for me’ she added.

‘Eiden for example has been sleeping on a blow up mattress in the lounge room, since he was born because we need council funding to fit and build rooms suitable for a disabled child or person.

‘We’ve been trying to get the funding for 7 years and what we’d really like is Eiden to have an accessible bedroom of his own. 

‘He’d adore having a real bedroom. The fact he has never had one keeps me trying to get funding and working out how to stretch the budget every day.’

Despite the multiple issues Eiden lives with, his family refuse to molly-coddle him, however, they do admit they are prepared for the worst.

Sasha explained: ‘Wrapping him in cotton wool would deny him life experiences. So we’ve adopted a quality not quantity approach to his life. 

‘Yes we have had to draw up funeral plans, but he has already lived past what many doctors expected. We live every day as it comes and Eiden’s involved in everything.

‘No parent should ever have to think about burying a child but we have. However Eiden’s a little fighter and despite doctors warning us not to expect much past the age of six Eiden is happy and relatively healthy, so we don’t bother thinking about funerals and the like.’

‘Eiden loves motor racing and music. We take him swimming and are planning holidays. He can’t talk, but we definitely know when he is happy and sad – we often say Eiden rules the roost.’ 

Eiden goes to a special school and his family ensures he has as many of the experiences a normal ten year old would have.

Sasha finishes: ‘We treat every day or event we go to as possibly Eiden’s last outing. It’s not obvious to other people we are smiling and just loving and living in the moment, but we have to be aware and prepared. 

‘Our priority is Eiden and helping the group which helps families like we were find that diagnosis for very rare disease.’