Two baby girls have become the first identical twins in Britain to be diagnosed with an incurable brain condition that killed Coleen Rooney's sister.
Kaite and Pete Sampson's daughters, Amelia and Ruby, have Rett Syndrome – a brutal and incurable genetic disorder affecting brain development – and may not make it into adulthood.
They were diagnosed after they displayed worrying characteristics of the syndrome leaving their parents heartbroken.
It claimed the life of Wayne Rooney’s wife’s sister Rosie McLoughin who died aged 14 in 2013.
And now new mum Katie said the thought of not seeing her daughters grow up is gut wrenching.
The 29-year-old said: “We were utterly heartbroken.
“When they were diagnosed I just screamed and cried and said to my husband ‘Why is this happening to us?”
“I can’t even explain how we felt on the day.
“It is horrible to think they are some of the only twins in the world to be unlucky enough to have it.
“They may not make it.
“I have heard cases where kids have lost their life aged nine so we don’t know how long we will have them.”
And even more harrowing is the fact that both only got it because they are girls as the condition barely exists among males.
Rett Syndrome, which affects just one in 12,000 girls annually, strips kids of the ability to walk and talk – even if they have already learned to do so.
It is rarely seen in boys and some sufferers can reach their 40s but added complications like epilepsy dramatically decrease life expectancy.
Amelia was diagnosed first in November before her sister was diagnosed just two months later.
Charity Rett UK said it is “very unusual” for identical twins to both have the degenerative illness.
Katie and her husband Pete, 34, have wanted kids since they started dating seven years ago.
They tied the knot in 2017 and Katie became pregnant shortly after.
Katie recalled: “I cried out with happiness when I was told we were having twins.
“My husband just said ‘oh my god’ and we were absolutely thrilled.
“Pete had this massive grin and we were both so excited.”
The little ones were born on September 7, 2018, but the parents soon noticed abnormalities in Amelia.
She was floppy, struggled to hold her head up and was much more delayed than her sister Ruby.
And in June of last year she had her first of many seizures – a common characteristic of Rett sufferers and Amelia now has them daily.
Scans in October revealed Amelia’s oxygen levels were deteriorating.
She spent 77 days in Birmingham Children’s Hospital and ended up in intensive care.
Katie said: “I started talking to the neurologist about Amelia’s future with seizures and she basically said she might not make it to adulthood.
“My husband wasn’t here and I had to tell him over the phone that our daughter may not make it.”
A month later it was confirmed Amelia had Rett Syndrome.
Because it is a genetic disease their other daughter – who was showing no signs of sickness – was also tested.
The results came back in January and revealed the worst.
Ruby was also diagnosed with Rett Syndrome and could now deteriorate at any time.
She has not yet shown any signs of regression but it is likely to happen from when she is 18 months old – just one month away.
The parents have now learned to look after Amelia – who requires constant treatment – from home.
Former IT consultant Amelia is now a full-time carer to the girls and is reliant on Universal Credit after ditching her job.
Pete is grafting extra shifts as a road planner to put food on the table.
They are keen to find out what the future may hold for their girls and knew Coleen’s family had suffered the same devastating blow.
Rosie was chief bridesmaid at Coleen and Wayne’s Italian wedding in 2008.
Coleen idolised her adopted younger sister and was devastated after her death seven years ago.
The wife of England’s all time goalscorer was holidaying in Barbados when her sister’s condition deteriorated.
She flew home to be by Rosie’s side in her final days.
Rosie was just 14 when she died and last month Coleen wrote on Instagram on the anniversary: “Forever in our thoughts. Love you Rosie.”
The syndrome means children lose the ability to live independent lives and they need constant help with communicating, breathing and eating.
Katie is now fundraising for two eye gaze pads to allow her precious daughters to one day be able to communicate.
The technology – which can cost up to £10,000 each – uses a computer mouse which you can control with your eyes.
Katie, of Birmingham, said: “Because Rett affects their hands they can’t function and won’t be able to learn sign language.
“It will be a way for them to talk to us.
“I don’t want to assume things for them, I want them to be able to tell us what they want.
“Everybody should have a voice.”
Rett Syndrome currently has no cure but Katie said she will never stop fighting until one is found.
Despite a difficult start to parenthood Katie already has memories she will cherish forever.
She said: “Amelia had her first giggle on Christmas Day which was beautiful.
“We rarely get a smile out of her let alone a giggle. I prompted it by tickling her and she never usually reacts.
“But she loves her cuddles and is a happy little girl.
“Ruby is really cheeky. She smiles, eats everything and grabs for everything and she is very outgoing already and knows her own mind.
“The twins are really close. Amelia doesn’t overly respond to her but Ruby is always reaching out trying to touch her.
“She absolutely adores her sister.”
A spokesperson for Rett UK said: “It certainly is very unusual to have twins with the disorder and clearly very difficult for the family to comprehend and deal with.
“There are several twins, non-identical, where one is affected.
“Rett syndrome is a particularly distressing disorder because parents are lulled into a false sense of security, thinking they have perfectly ‘normal’ children and then slowly and insipidly they start to lose key skills walking, talking and feeding themselves.
“This is referred to as the regression.
"This normally happens in the second year of life but in those that are more severely affected it can happen much earlier.
“But that is just the start of it really.
"There are multiple comorbidities that occur with Rett syndrome – and they start to emerge after the regression – typically epilepsy, breathing problems, scoliosis, dystonia, gut and bowel problems to name just a few.
“Most sufferers are left needing 24/7 care for the rest of their lives. The lack of purposeful hand use and no speech makes communication very difficult but we know that generally understanding is very good.
“With lots of support people with Rett syndrome can learn to communicate using alternative methods, including using eye gaze technology.”
To donate to the family's fundraiser visit here.
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