Girl with half a brain defies odds to walk 198 miles for charity

A schoolgirl left with half a brain after suffering from a rare condition as a baby is set to complete the last mile of a 198-mile challenge for charity, despite having limited mobility.

When Angelina Mills, from Gresham, north Norfolk, was just 13 months old, she was diagnosed with Sturge Weber syndrome (SWS) - a rare condition that triggers life-threatening epileptic seizures.

As a toddler, she underwent functional hemispherectomy surgery to disconnect the left side of her brain due to the severity of her seizures, which would happen two to three times a day.

Her mother, Lisa Massingham, explained how the whole family had to come together to support each other during the early days of her diagnosis.

“Angelina’s brother, Luca, asked if she was going to die,” she said. “I had to stay strong and tell him everything was going to be okay.

“When the boys were growing up, they watched a documentary which featured their sister called Inside the Human Body. It mentioned that SWS was life-threatening. Having watched this, Luca knew it was very serious.”

But nearly a decade on, the now 11-year-old, along with a friend also diagnosed with the same condition, has embarked on a walking challenge to help the charity which supported them and their families since birth.

Angelina and 19-year-old Caity Downs, of Brighton, will both complete the last mile of their 10-week challenge during the afternoon of Tuesday, September 1, (today) for the charity Sturge Weber UK.

Sturge Weber UK is a voluntary support group for families and adults affected by the rare neurological disorder. A registered charity, it was launched in 1990.

Ms Massingham explained the special meaning behind the miles.

“It’s the distance between Norfolk and Brighton where Caity, another girl with the same condition, lives.

“The girls both had the same surgery to remove half their brains, called a hemispherectomy, with the same surgeon, William Harkness, at Great Ormond Street Hospital, but years apart.”

The girls first met through the charity’s social events 10 years ago.

Then, in December 2018, Angelina had tendon transfer surgery to correct her foot position, caused by a brain-damage condition known as hemiplegia, and relied on a wheelchair for four months afterwards.

She was unable to walk or bear weight on her leg leading up to the surgery, yet with the support of her family and together with Caity, they chose to embark on this often-painful challenge.

Ms Massingham added: “The girls have been friendly ever since they were little, but because they can’t see each other this year because of Covid-19 they wanted to do something together, so they’re both walking the distance, around the area where they each live.”

Despite both girls suffering from developmental delays, social and behavioural deficits, hemianopia (vision loss in one side of the eyes), autism, and having no mobility in either their hand or ankle on one side of their bodies, they are now at the end of their challenge.

“Angelina has been doing lots of walks around Gresham and Sheringham seafront,” Ms Massingham said.

“She did 1.8 miles the other day which is the longest she’s walked in one go. It’s incredible for a little girl who couldn’t even walk two years ago.

“This is also building their confidence which is great.

“I’m amazed at how much support the public has given the girls. Every time somebody makes a donation it gives them so much determination.

“I’m so proud they are raising money for the charity that has helped them through their childhood years. I don’t know what we would have done without its support.”

Ms Massingham hoped the fundraiser would also encourage other parents.

“Don’t feel like you are alone, help and support is out there. Also, remember that your child’s abilities actually outweigh their disabilities.”

Speaking about walking along the coast, Angelina added: “I like to go to Great Yarmouth pleasure beach, and often drag my mum on the rides. My favourites are the rollercoasters.”

The pair have already beaten their fund-raising target of £1,250 to raise £6,001 so far. To donate, visit www.justgiving.com and search for Angelina’s and Caity’s 198 Mile Challenge.