A mum has told of her agony while her little girl suffers up to 100 seizures a day.

Sam Gonzalez-Bellow, from Margate, said five-year-old Ella only manages short bursts of energy to play before having a fit.

The 41-year-old mum said the family waited two years for a diagnosis to discover she has White-Sutton syndrome, a rare condition.

The youngster already had an Epilepsy diagnosis “her fits progressively got worse over the years,” Sam explained.

“She was having only three fits a week originally, and now she's having up to 100 a day.

“She sleeps most of the day - she comes to life and has a short burst of energy and a play and then she has a seizure and is knocked out again.”

Sam said doctors told her something was wrong during pregnancy, but had no idea just how rare and serious her daughter's condition was.

She recalled: “When Ella was born, she wouldn't feed at all.

“She wouldn't latch onto anything - she just couldn't do it.

“We persevered for 24 hours but then she was taken to special care in QEQM and fed through a tube.

“They took her away in the middle of the night and I didn’t really know what was going on.”

Miraculously, after a month in hospital baby Ella began to feed by herself and was discharged three days later.

“We were a bit naive and thought it was just a glitch in the road - we had no idea.”

Genetic testing was done, however the first results came back clear.

After that, the parents were “sort of left alone to muddle through” until Ella reached age one.

Their daughter was “constantly unwell”, still struggled to feed and wasn’t hitting any of the milestones she should have been.

She was given a blanket diagnosis of severe global developmental delay.

However, Sam admits she and husband Chris were “in denial” something was not quite right with with their little girl.

“It's strange to say it now, but we were completely in denial over the fact she was disabled.

“To look at her now there's no two words about it - she's severely disabled - but as a baby we just sort of lived in hope.”

Soon, the young girl started to go drastically downhill.

“She kept getting sick because she was aspirating on all her food.

“She got very unwell and had a really bad chest infection, then they decided as an emergency to put her on an NG tube again.”

Sam and Chris were reluctant for Ella to be tube-fed again, as they felt she had already overcome that battle.

However, she soon put on weight and slowly began to develop, showing interest in toys and playing.

By the time she was three, she learnt to sit independently and shuffle herself along the floor.

But just as things were looking up, the seizures started.

“All the milestones that she hit have regressed now” explained Sam.

“She's back to behaving like a three-month-old baby.

“She can’t remember how to sit or drink out a sippy cup.

“It’s hard to stand by and watch that regression.

“The skills she did have were so massively celebrated at the time - now she’s lost them.”

More tests were done and just before her fourth birthday – two years on from their first appointment – the girl was diagnosed with White-Sutton syndrome, a gene mutation that causes a variety of symptoms.

There is a large scale of severity, with some sufferers even getting their drivers licence and others like Ella having few motor skills.

Little Ella has every symptom of the syndrome except sleep apnea.

It is rare, and due to a lack of technology scientists only discovered how to get into the gene to diagnose it about five years ago.

As of April this year, only 80 patients have been successfully diagnosed, but researchers believe the mutation could account for up to 1 in 700 cases of autism-presenting disabilities.

Now, Ella is non-mobile, non-verbal, has hearing loss and visual loss.

She had 10 admissions to hospital last year for pneumonia alone and lost a lot of weight.

Despite this, she is a “bubbly, sweet girl” who’s “always smiling”.

Sam, who works at Saga, described her as a “forever newborn”.

“She loves a cuddle,” the mum added.

“She’s very friendly and loves her big sister Mia.

“When they get home from school they sit on the sofa next to each other and she loves cuddling up with her.”

Mia is equally “besotted” by her younger sibling, calls her ‘my baby’ and is her “best friend”.

However the eight-year-old has “missed out on a lot”.

Her mum said: “She’s such a good girl - she’s never resentful about it but it does affect her.”

Ella is currently sleeping in a bedroom upstairs, however the family would like to move her into the living room.

They would also like to make the dining room her wet room, meaning they need an extension on the house to create their own living space.

Furthermore, Ella needs a new specially designed car seat.

Her mother explained: “We can't just go to Argos and buy one - the car seats have to be bespoke ones for special needs and you're looking at £2,000.

“We get a hoist system in her bedroom from a grant but we would like another one so she can be hoisted into the living room too.

“We want her to be part of the family and not stuck in her bedroom.”

As well as this, Ella needs a new wheelchair as she has almost grown out of her current one - another £1,000 bill.

“The bigger she gets the more equipment she needs and the more expensive it is.”

They are entitled to a £30,000 disability grant to change their home and improve Ella’s quality of life, but they still have to foot a big chunk of the bill themselves and have taken out a “huge” loan to help cover some of the cost.

After a meeting to discuss the finances Sam and Chis were “beside themselves” thinking of how they would manage it.

But family members Muriel, Jim, Danny and Sharon have now set up a GoFundMe to raise funds for the vital home adaptations.

They are also doing a charity football match on July 2 at WW Martin community stadium in Ramsgate.