30 seizures a day: Telford schoolgirl Shania, 11, recovering after brain surgery

The brave Telford Langley school pupil has had to have the right side of her brain separated or risk her condition becoming more severe.

Now, a month after the surgery, Shania’s mother Tilly said she is slowly but surely building her strength.

Although she is expected to stay at Birmingham Children’s Hospital for at least another four weeks, the family must now start to work out how to alter their home to make it more suitable for Shania’s needs.

It was just before her 10th birthday that she had her first seizure. She had always been healthy and fit but the first attack in January 2016 lasted for about 30 minutes.

“After weeks of tests I asked for her to be referred to Birmingham Children’s Hospital,” mother-of-three Tilly said.

“They confirmed that there was something other than epilepsy. They did the biopsy in September and since then it has been go, go, go.”

The time between the first seizure and diagnosis was terrifying. Shania was having up to 30 seizures a day, and they varied wildly in intensity and symptoms.

“She used to be petrified,” Tilly said.

“It wouldn’t just be one kind. She had as many as seven or eight types of seizures, which made her worry. They were strong or weird. Some of them hurt her.”

Shania was diagnosed with Rasmussen Syndrome, which causes one hemisphere of the brain to become inflamed and deteriorate. The deterioration is irreversible.

The condition is exceedingly rare, affecting only one in 1.8 million people. The only way to stop the seizures, doctors said, was to disconnect the right side of her brain.

But Tilly said there was no choice – without the surgery, she would continue to get worse.

Tilly set up a Facebook page, Shania’s Rasmussen Fight, to help show Shania how much support was out there.

Hundreds of people sent messages to help her make her decision.

In the four weeks since the operation, Shania has already managed to stand, although extensive physiotherapy will be needed.

“I’m very proud of her,” Tilly said. “It’s a long road ahead, but there’s already been mega progress.”

The family is supporting Big Bandage 18, a fundraising campaign for Birmingham Children’s Hospital.

In its fifth year, the Big Bandage campaign is one of the biggest events for the children’s hospital.

A spokeswoman said: “It is only through the kindness, generosity and hard work of our supporters raising these vital funds that we are able to do more and more every year to take us closer to achieving our vision to provide the best possible facilities and environment at Birmingham Children’s Hospital.”

The hospital will use the money to buy equipment, toys and play tools to make the children’s time in hospital easier.

For more information or to sign up to run an event visit bch.org.uk