Unbelievable Angelina inspires family’s fundraising campaign
PUBLISHED: 09:28 23 January 2017 | UPDATED: 09:28 23 January 2017
The family of a youngster with a rare neurological disorder have set their sights on raising cash for the specialist charity that has supported her, after drumming up nearly £12,000 for Great Ormond Street Hospital, where she had brain surgery as a toddler.
Seven-year-old Angelina Mills, who lives at Gresham with mum Lisa Massingham and brothers Luca and Stefan, was born with Sturge-Weber Syndrome, a condition affecting the skin, brain and eyes.
As well as having a port wine stain birthmark on the face, sufferers of the disorder have an extra layer of blood vessels over the surface of the brain - which can cause seizures - with other symptoms ranging from vision problems and headaches, to developmental delays and weakness on one side of the body.
At the age of just 13 months, Angelina underwent a pioneering operation at Great Ormond Street Hospital which saw her surgeon disconnect the part of her brain that was causing her to have up to 30 seizures a week.
“Before the surgery it was just awful,” Ms Massingham said. “Even with anti-convulsant drugs Angelina was having seizures and stroke-like episodes and she didn’t crawl, smile or show any sign of having a personality – she had the development of a three-month-old baby.”
The transformation was “incredible”, Ms Massingham said, and Angelina went on to make developmental leaps, including attending nursery and, in 2013, joining Sheringham Primary School as a pupil.
“She is unbelievable,” Ms Massingham said. “Her personality is so strong and the determination and spirit she has is amazing; it is almost like a fog lifted and she is absolutely full of life.”
But, while Angelina’s seizures – which could cause further brain damage – were effectively controlled by the operation, the youngster was left with vision problems, social and communication difficulties, and severe weakness in on side of her body, which means she is unable to use her left hand, needs to wear a splint on her leg and relies on a wheelchair to travel more than a short distance.
Keen to help others with similar experiences, Ms Massingham, Angelina’s dad Stephen and other family and friends kicked off a fundraising campaign that saw them raise nearly £12,000 towards a new clinical building at Great Ormond Street.
Events included a two-mile sponsored walk around Sheringham - completed by Angelina at the age of just two - as well as collections, raffles, a parachute jump by her uncle James Millar and donations from local businesses and individuals.
Ms Massingham also joined Sturge-Weber UK as a trustee and fundraising co-ordinator, while her parents Beverley and Ivan began selling homemade crafts at local venues, raising more than £500 for the charity over the past year.
However, Angelina’s problems have recently worsened and her parents are hoping to transfer her to a school for children with additional needs in September.
“I am so happy that she has had the opportunity to attend a mainstream school, but it has come to the point where they are just not able to cater to her needs,” Ms Massingham explained.
The youngster, who has had laser treatment to reduce the birthmark on her face and a series of Botox injections to relax the muscles in her affected leg, will need further treatment to keep her mobile.
“It is hard, but Angelina has spirit and determination and, although I still cant help worrying that she will have another seizure, I feel very lucky that she has been given such a better quality of life as her future was looking very bleak and we felt we were losing her,” Ms Massingham said.
The family plans to continue raising funds for Sturge-Weber UK which, Ms Massingham said, provides vital support to families.
“Because it is such a rare and complex syndrome, you can feel very alone and I do what I do for the charity as it helps people feel less lost and lonely.”
For more information about Sturge-Weber Syndrome, visit www.sturgeweberuk.org.uk
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