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Alex’s story: “You try not to think about the future but you have to think about the future”

“Alex and his twin sister, Talitha, were born fifteen weeks early. They were both so tiny, they weighed less than a bag of sugar each. They were both quite poorly, but that’s not uncommon for babies born so prematurely.”

In September 2009, Alex’s mum, Steph, had an infection and went into early labour. It quickly became clear that Alex was having problems breathing and feeding. He spent the first six months of his life in hospital before he was cleared to go home and the family could spend some much-needed time together in their own home.

But Alex was still having difficulty breathing and feeding and, after only eight weeks at home, he was rushed back to hospital. Alex was diagnosed with Tracheobronchomalacia, a rare condition that meant his windpipe was too soft. “We were told there was a chance he would grow out of it, he just had to get bigger.”

For the next four and a half months, the family travelled between the hospital and their home, hoping life would settle soon. Alex was fitted with a tracheostomy to help him breathe and the family hoped he would be more comfortable. But, at eleven months old, Alex was diagnosed with Quadriplegic Cerebral Palsy. Life to follow was about to become more complicated.

One step forward, one step back

“Life with Alex was full of ups and downs. One day he’d be a really happy, smiley child, but then there would be periods where he was obviously in pain and struggling.”

Steph recalls one Christmas when Alex was two years old. “He came down with an infection on Christmas eve and we spent the night in intensive care. It was a really awful night and the doctors were talking about potentially starting Alex on ECMO, a type of life support. However, Alex wasn’t a suitable candidate due to his age and cerebral palsy. But, in typical Alex style, he bounced back with a smile by Boxing Day. He’d look at you like he was wondering what all the fuss was about!”

Alex was later diagnosed with Dystonia, a condition that causes muscles to contract involuntary.

You can have Cerebral Palsy on its own and you can have Dystonia on its own. Or you can be one of the unlucky ones and have both. That was Alex. One of the unlucky ones.

It took a lot of trial and error to find the right balance of medication for Alex.

“Trying to get a diagnosis and then learn how to cope with it was really tricky. You’d just find a routine that would work for him and then he’d be ill again and throw another curveball. It was almost like a rollercoaster.”

In May 2020, Alex was admitted to hospital with another infection.  During this three month long admission it was decided that Alex and his family’s quality of life would be improved if he went home on a ventilator, thereby reducing hospital admissions.

However, in March 2021, Alex took poorly again. This time, his left lung had collapsed. Alex’s family prepared to say goodbye with end of life care at home: this meant 24/7 community care team access, and end of life medication and equipment delivered to the family home.

But, in true Alex style, he turned everything round and by Easter he was his charming self again.

Getting out and about

With Alex showing signs of recovery, the family set a target of doing more activities together outside of the house, making the most of every moment. Getting out as a family had always been something that was quite difficult and took a lot of planning as Alex’s morning routine was so intense and his illness so unpredictable. It was difficult to fit plans around his care.

“We booked tickets to a relaxed performance of the Lion King and it was one of the best things we could have done. There was no guarantee that Alex would make it to the show but it gave us all something to look forward to.”

There was a lot of planning and preparation involved, including a 37 page risk assessment that had to be put together. But, together with a nurse and carer, the whole family were able to attend in July 2023.

“It was a fantastic day. Everything went smoothly, which isn’t always the case! It meant the four of us, as a family, could enjoy some time out the house together. We had a wonderful afternoon.”

Alex’s death

In September 2023, everything changed. “You try not to think about the future but you have to think about the future. You always try and put it to the back of your mind.

You know that they’re never going to live a very long life but you just take it on a day-by-day basis.

Alex became poorly quite quickly and with no warning signs. He was rushed to PICU (Paediatric Intensive Care Unit) where the Chief Medical Officer – who had seen Alex grow up and knew the family well – took the family aside and broke the news. Alex had pneumonia, which had developed into septic shock. There was nothing more they could do for Alex to keep him alive.

“We always said Alex would be the one to decide and he’d decided he had had enough. It was the time we had hoped would never come.”

Alex died two weeks after his fourteenth birthday. “We played Lion King music, turned the sensory lights on, and Alex lay with his favourite froggy pillow. It was very peaceful.”

The Butterfly Fund

After his death, the family were referred to receive a Butterfly Fund grant from Together for Short Lives.

With so many things to organise in the first couple of weeks after Alex’s death, the family spent the money on day-to-day living costs. “It provided that extra bit of assistance at a time that was already hard.”

“After your child dies and the government payments stop, those initial costs can make life incredibly tough, especially when you are struggling to come to terms with everything. That’s where the Butterfly Fund is a huge help.”

Donate to the Butterfly Fund today. Your gift will give a family like Alex’s a helping hand when they need it most.

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