‘The darkest time was when the surgeon said they were going to take half my child’s brain..’ Five years on from north Norfolk girl Angelina’s risky operation
Five years ago next week a very sick baby underwent pioneering surgery to disconnect half her brain, permanently removing parts of it.
Today Angelina Mills' parents are celebrating the success of that operation which gave them back their cherished daughter.
Now mum and dad Lisa Massingham and Stephen Mills both believe, despite battles and setbacks ahead, their determined little girl will make her mark on the world and are hopeful that she will enjoy her life.
Angelina, who was six on June 2, was born with a port-wine stain on her face and began having uncontrollable and serious seizures when she was 18 weeks old.
They became so frequent that she slept for 19 hours a day due to medication and exhaustion, and her family dreaded her waking up because they knew it would only be a short time before she had another severe fit.
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She was diagnosed with the rare Sturge Weber syndrome, which caused her stain and epilepsy. Mercifully, the fits were controlled by the seven-hour operation at Great Ormond Street Hospital (GOSH), London, on June 24 2010.
But Angelina must learn to live with left-sided weakness. She has very limited use of her left arm and her leg often gives way. She has also lost vision in the left side of both eyes, has delayed development, and mild social and communication difficulties. And she will continue to have regular laser surgery to lighten the port-wine stain.
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'She's now 98pc seizure-free and has been off all anti-epilepsy medication since 2012,' said Ms Massingham, 39, from Gresham.
'The darkest time was when the surgeon said they were going to take half my child's brain and we didn't know what we would get back of her when she woke up from the surgery.
'But the operation was one of the best decisions we've made. We took a 13-month-old, equivalent to a three-month, baby into hospital - and we came out with a little girl. Finally, the fog of epilepsy, which had been holding her back, had lifted.
'She won't let her disabilities stop her - she finds a way to compensate. She is so determined that I can see her following in the footsteps of Margaret Thatcher!'
Now Angelina, who has two older brothers - Stefan, 12 and Luca 14 - is at Sheringham Primary School where she has a group of loving friends.
She can count to 20, write her name, say 'Hello' in five languages, jump with both feet off the ground and has achieved many other milestones.
'She's got such a fighting spirit and loves life,' said Mr Mills, 48, from Sheringham. 'When she falls over because her leg is weak, she cries for a little while and then off she goes, smiling. I wouldn't change her for a so-called 'normal' child. She's my unique Angelina, full of love.
'That girl could climb mountains - and that's something she will have to keep doing throughout her life.'
? Team members are needed to join Angelina in a sponsored three-hour skate at Funkys in Norwich on August 24. Please visit https://www.justgiving.com/teams/skate4angelina and help raise money for Sturge Weber UK.