Meet the Cobby Family: Their Life with SMS in Ibiza

Since getting a diagnosis the Cobby family have gone above and beyond to raise awareness for SMS and to raise funds for the SMS Foundation UK.  So much of what we do here at the Foundation is about learning from one another to support one another. We asked Lucinda if she was happy to share her story with the SMS community. Here is what she said. 

When was Theo first diagnosed? 

Theo was diagnosed at five years old. We knew something wasn’t right, but we couldn’t pinpoint it. Was it having the deal with three languages? We didn’t know. He had an MRI scan which lead to him being in ICU in the April.  The neurologist couldn’t put her finger to it, she said Theo had some autism traits, but other aspects were not typical of a child with autism. She vaguely remembered something from her university lecture days about Smith-Magenis syndrome and sleep deprivation.  She sent us for genetic testing, and we had this in the October.  

In the December we went to Palma to meet the genetic specialist who told us about Theo’s diagnosis. He was open about having no understanding of Smith-Magenis syndrome and said “I don’t know much about it. Look on google”.  We look back at this day and realise how huge this news was, and yet the doctor who delivered the news to us had very little idea of how huge this would impact our lives.

What was the hardest part prior to his diagnosis? 

Before we received his diagnosis, we found the nights the hardest of course. Julian, Theo’s dad was working nights in the summer, and I had to deal with a child who would not settle back to sleep for me at all.  It was horrific at times.  We couldn’t understand why he wouldn’t stay asleep.  All mums moan about how tired they are, yet I felt that our tiredness was a whole other level. He would wake up as a baby demanding milk, I would give it to him and that would give me two hours at best before it started all over again.

Marty, Theo’s younger brother, joined our crazy family in 2017, and the summers of 2018 and 2019 were the worst. Trying to deal with a newborn who slept better than Theo and battling with Theo. It was never ending. I would be sleep deprived and wander around in a zombie state. Julian would come in from work obviously exhausted and tired and I would be there with Theo, begging for an hour’s sleep. Looking back, it was crazy.

Why did the MRI lead to Theo being in ICU? 

For Theo to get an MRI he needed to be sedated and therefore required an anaesthetic. At the time he had a cold. After they had administered the anaesthetic, he had mucus pouring out of his nose and, in hindsight, we should have cancelled the procedure there and then. While we were waiting for him to come round it became like a scene out of the television programme, Casualty. All manner of people flying in and out and going through the doors to where Theo was. We didn’t know what was wrong.  We waited for what felt like eternity, before they informed us that his lung had collapsed, and he was in intensive care unit (ICU).  We were then told he had to be flown to Majorca to the Paediatric ICU.  

The brilliant team of five doctors and nurses that flew from Majorca to Ibiza to collect him and take him to Majorca were incredible. He had a collapsed lung, pneumonia and was on a breathing machine. The mucus was incredibly thick and gunky and greeny brown in colour. He was in ICU for a week and then moved to the ward for four more days. This horrific incident led to more appointments where we found out more and more of his condition and eventually learned that he had Smith-Magenis Syndrome.  He was unbelievably weak after ten days on hospital and we had to wean him back to school.

Can you tell us more about the support you received from the SMS Foundation?

Once we received the diagnosis, we reached out to SMS charity. Julian did to be fair; I was mourning the loss of my dad who had just passed away and I wanted to bury my head in the sand. Hazel rang us, and I clearly remember just crying down the phone at her. Julian had to take over and was clearly the calm one, trying to work it all out. I remember Hazel’s voice being so reassuring and kind, but I couldn’t speak as the tears rolled down my face. She gave us lots of information. And we googled a lot as well. Freaked out a fair bit too, as we tried to grapple with the new ‘neuro lingo’.

We had already been giving Theo melatonin on the advice of the neurologist and it was Hazel who told us about slow-release melatonin.  Theo had no problem going to sleep but it was the waking up in the night and the refusal of not going back to sleep unless Daddy was there!  I was more than happy; it meant I was able to grab some sleep 😉

How does Theo manage at school? 

His mainstream school have been amazing from the offset. He started at aged 3 and things like being toilet trained etc was no mean feat.  Between his school and the Department of Mental Health in Ibiza they have given us so many appointments for us to attend, all to help Theo in his development and progression. We had so many appointments that we were going to we didn’t know what we were turning up for but we continued and the help that he was given has been, and is still, incredible.

Each year they adapt what Theo is offered. At no point have we had to fight for anything. He is given speech and language support, occupational therapy for his needs, water therapy, and physiotherapy for this motor skills etc.  He doesn’t need a one-to-one, however there is a support team who works with him individually on a day-to-day basis and he works well with his classmates. 

I find that as Theo and his friends are growing up, the empathy and patience his classmates once had when younger, is perhaps reducing. This is normal but it makes me sad because it will I’m guessing form a gap between them as Theo won’t ever be able to keep up with them academically, emotionally and physically. This has to be frustrating for him, however he never once moans. The girls certainly have more patience than the boys with Theo. They include him in parties, and he gets involved in everything.  We worry about him, and we worry about his future, but he takes it all in his stride. 

What worries you most? 

Looking even more ahead, the SMS weekend at Mount Cook highlighted to me about sheltered living. This really got to me, and I was emotional because of this. I have so many hopes for him. I hope he can undertake some sort of work. Not sure what. I don’t know about secondary school yet. This will be our next situation to deal with in 2026. The nurturing of the primary school to the starkness of the secondary school is also not ideal for Theo. 

How has SMS changed you as a person?

I feel that this syndrome has taught me that you cannot look too far into the future, otherwise you can get yourself bogged down and depressed. We try not to think too much about the future, with having an SMSer, life has taught us you can’t predict every situation, we have to deal with it at that time rather than spend time focusing on something that may not happen. Theo surprises us with tackling situations that we as parents are worrying about. He is incredible in every way despite having this syndrome. It can be a sad and lonely time for us as parents and we have had to adapt. Spur of the moment activities, nights out etc have to be planned with meticulous precision or left as we have to think of Theo who doesn’t like change at all.  Another thing, if we are out one of us always needs to be ready to cut the fun as we think of Theo and getting him to sleep. In other words, one of us has to be the sensible one. 

We have toyed with the idea of moving back to the UK but Theo gets so much support and help from everyone in Ibiza.  Everyone seems to know Theo. He literally knows more people than I do. And they all adore him and want to interact and help him. Even Marty said the other day, how does everyone know Theo?! I thought that was amusing.

I have concerns that as he gets older this will subside. Being a child with special needs people are naturally more empathetic but when the child grows up into an adult, people may not show the same empathy. It’s a bitter pill. 

People with SMS are often said to light up the room, what brings you joy?