A boy with cysts the size of a grapefruit on his face has defied all the odds to take his first steps.
Alex Grabowski, four, was born with cystic hygroma – a collection of fluid-filled sacs – on his face and in his airways.
The weight of the growths make it hard for him to balance.
But after eight gruelling eight-hour operations at London’s Great Ormond Street hospital, the brave youngster can now walk independently.
Alex’s mum Emily said he has come on in “leaps and bounds” since the debulking surgery to reduce the size of his cysts.
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His speech is also starting to improve and after saying his first word – ‘bubbles’ – Alex is now starting to form sentences.
While the youngster still needs a tracheostomy to help him breathe and is fed via a tube, it is thought that one day, he will be able to have it removed and live even more independently.
Mum Emily, 35, said: “We don’t know what the future will hold, but I can only hope.
“Alex has already come on in leaps and bounds.
“We still sign with him but Alex is starting to talk better, too. He is very good at getting his point across.
“Caring for him is hard work – but I wouldn’t have it any
other way.”
Emily first found out Alex had cystic hygroma at her 20-week scan and admits that she was “scared” for what her unborn baby would look like.
But when little Alex was born in January 2017, at St Michael’s hospital in Bristol, Emily “thought he was gorgeous and burst into tears”.
Alex spent the first six months of his life at Bristol Royal Hospital for Children, where he underwent his first rounds of debulking surgery.
Single mum Emily also had to be trained in how to care for her son before she could bring him home to Midsomer Norton in Somerset.
Emily, who is also mum to Roman, eight, said: “It was very daunting, bringing him home.
“It was suddenly just me who had to look after him.
“I had to get used to going places with all of his equipment.”
While there are many unknowns about Alex’s condition and he will probably always need treatment, Emily says his prognosis is good. But sending him off for debulking operations never gets any easier.
“I cry every time he goes for a surgery,” Emily said. “They take eight hours so it is a long wait.
“One of his cysts is over a nerve that could paralyse his face if they hit it so they have to be really careful.”
Emily, who has been supported by the Rainbow Trust, Jessie May and Children’s Hospice South West charities, also worries about what people will say about Alex when he gets older.
“Most people are lovely, but there have been some nasty comments,” she said.
“People have told me he looks scary and one man came up to me and asked if he was real.
“I’m worried about him having to deal with it by himself but I love Alex. I wouldn’t change a thing.”
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