Bumblebees buzzing thanks to BBC Children in Need

The Bumblebee Children's Charity runs weekly sessions

When Hannah Taylor gave birth to her son Leo during the Covid-19 lockdown of 2021, she assumed everything was fine.

She was quickly sent home to Sudbury in Suffolk, and it wasn't until her son was seen by a nurse 10 months later that Hannah realised something was wrong.

Leo was diagnosed with a rare condition called KCNB1, which affects brain function and causes frequent seizures.

He was told he may never walk or talk, but Hannah took him to The Bumblebee Children's Charity in Sproughton near Ipswich, which is supported by BBC Children in Need.

It was there, thanks to the support and belief of the therapists, where Leo defied the odds and took his first steps.

"It was a moment I'll never forget," said Hannah.

Ivana Barron is a trustee at The Bumblebee Children's Charity

The charity helps children under five overcome physical difficulties and often complex medical needs.

Some of them have recognised disabilities such as cerebral palsy or spina bifida while others have visual and hearing impairments or neurodivergent challenges such as autism.

Ivana Barron is one of six trustees at the charity, which was given its name by the parents about 10 years ago.

"By all the laws of aerodynamics the bumblebee shouldn't be able to fly, but no-one told the bumblebee that," she said.

"That's very much how we view our children."

Hannah Taylor is the mum of Leo, who has received support at Bumblebees

Ivana added: "Often, if the children are diagnosed from birth or just after birth, parents are sometimes told their children may never walk, may never talk, may never look after themselves.

"As a parent myself, that's quite devastating. Here we try to defy some of those things – we don't like the word 'never'."

'No-one was interested'

Leo's mother Hannah said: "It wasn't until my mum was allowed to see us for the first time when Leo was about two months old [that we knew something was wrong]. She's worked with children with special needs and she knew something wasn't quite right.

"But when we tried calling midwives, health visitors, GPs, no-one was interested unless you were literally dying of Covid.

"They didn't care, so I had a real big fight."

Eventually, Leo was seen by experts and was diagnosed with KCNB1. It's a form of epilepsy which affects his speech, language and movement. He can also have up to 25 seizures a day, and many through the night.

"Leo had his first seizure with me in the car. It was a moment I will never forget. I wasn't prepared. I should have had more information and more knowledge of what was to come," said Hannah.

Hannah goes to the The Bumblebee Children's Charity with son Leo

What was to come keeps Hannah and her husband awake at night as Leo can have up to 20 nocturnal episodes.

"He lets out an awful high-pitched scream, like he's screaming in pain," she said.

"Once they start they could come every 10 minutes.

"The lack of sleep really affects you and there are days when we can't cope, but we muddle through. As parents, we just have to muddle through and get to the next day."

'Sunshine on a grey day'

The charity has been given three years of funding by BBC Children in Need to help with its with running costs.

"We have six fantastic members of staff, the overheads of the building, rent, business rates and bills. The funding helps us towards that and it's absolutely vital to keep us going," said Ivana.

For Hannah and her family, the charity has been a lifeline.

"I was in such a low place when I came here. I was in despair because Leo was so delayed in his development," Hannah said.

"A lot of families come to Bumblebees without hope because they have been told their child won't be able to do this or that, but it's not always true and they provide that hope.

"They are the sunshine on a grey day."