MOTHER WITH THREE TERMINALLY ILL CHILDREN ISSUES HEARTBREAKING APPEAL AFTER LEARNING THE CHANCE TO SAVE HER SONS WOULD FORCE HER APART FROM DYING DAUGHTER.
PARENTS have spoken of their heartbreak after all THREE of their young children were diagnosed with a rare and deadly brain condition unwittingly inherited from them.
Identical six- month- old twins Oscar and Phelix share the same cute button nose as their three -year -old sister Paige, but tragically the tots also share a fatal gene, which comes with a life expectancy of just five years.
Paige’s symptoms are already so advanced this could be her last Christmas with her family, but there is hope for the twins thanks to medical trials in Italy showing miraculous results, meaning they could live longer.
Treatment for the twins will be funded by the NHS but Leah and Shaun Scott need to raise enough to take their dying daughter with them as they refuse to leave her behind.
Leah said: ‘ As a mother, to be told all three of your children have a terminal disorder is unimaginable, it’s heartbreaking, but there is hope for the twins and we will keep fighting for them while ensuring that we make the most of the time we have together as a family.
‘We had no idea that Paige had this condition when we conceived the twins and only found out when I was about to give birth.’
Paige was a happy and cheeky toddler when her parents Leah, 27, a fashion retail manager and Shaun, 30, a factory worker, first noticed she was unsteady on her feet.
It led to a series of tests that devastated their world when they were told that she suffered with a rare and incurable disorder called metachromatic leukodytophy or MLD and that causes a breakdown between the nervous system and the brain for which there is no cure. It would rob her of her ability to walk, talk and see, leading to paralysis and premature death. I
In a second bombshell they were told that Paige had inherited the condition from them as both were carriers of the dormant gene, which had only been passed on thanks to the one in 160,000 chance they had met.
The news came when heavily pregnant Leah was due to give birth to identical twin boys and the devastated couple were warned that they too might be affected.
As they were due in just a few weeks time Leah refused a late termination, praying that her twins would not follow the same fate as their sister who was by then already quickly succumbing to the disease.
But at six weeks old tests showed they BOTH had MLD.
Former fashion retail manager Leah said: ‘I just broke down. Nothing on earth can prepare you for being told that all of your children have a terminal condition. It is unimaginable to think all of your children could be taken from you.
‘The twins looked so perfect but I knew they would start to regress like their sister.
‘We felt so guilty that we passed it to them even though we never knew we even had it.’
They are thought to be the largest sibling group in the UK affected by the condition.
Leah says she wouldn’t have tried to conceive again had they known about Paige’s condition.
She said: ‘ Because she had been meeting all of her milestones like any other child aside from her walking we thought at the very worst she might have a disability which of course we could cope with.’
For their daughter the future is bleak, but because the condition lies dormant in the twins and they don’t yet show symptoms there is a ray of hope.
Consultants at Great Ormond Street have recommended they take part in pioneering gene therapy trials in Italy.
Though still in early stages it appears to be so far successful in treating children with MLD before symptoms start to show.
The treatment will be funded by the NHS, for which they family are incredibly grateful. But they are fundraising to be able to take daughter Paige with them.
Mum Leah said: ‘ Every day it takes another piece of her. Her life expectancy is so short I cannot face leaving her behind. I have to try and save my sons but I cannot be parted from my daughter when we don’t know how long she has left.
‘Every minute we share with her is so precious as she fades ever day. I need to take my twins to Italy but I need to be with Paige too.’
Dad Shaun will take unpaid leave from his factory job to travel with them early next year. It could take between four and six months and family and friends have started an appeal to help fund the cost of disabled accommodation, medical transport and a nurse to help meet their daughter’s needs.
Family have also pledged to help pay the bills on their private rented house so they have a home to come back to.
The front room has been turned into a mini hospital suite and sensory room for Paige who is now under hospice care.
Shaun said: ‘Paige is my princess and seeing her little smile while she still can is what keeps us going every day. We will do all we can to save our sons but we need to make this time special for Paige too.’
In the months since the twins were born the little girl’s condition has faded fast and she needs around the clock care.
Mum Leah said: ‘The joy she gets from being with us and hearing our voices is all she has left in the world now but I can’t be in two places at once. I need to take my sons to Italy but I have to raise enough to take my dying girl too. Time with her is more precious than any present I could wish for.’
To help support the family please visit www.gofundme.com/6q6799a4