02 March 2010 By David Coates
A little girl who lived in isolation for the first 13 months of her life after being born without an immune system, is now the face of the charity which gave her a second chance. To see Elle Heim-Sarac bouncing around her grandmother’s living room, it is difficult to believe she is anything other than a normal five-year-old girl.
But just over four years ago she was close to death and some of the country’s leading children’s doctors were baffled by the illness which was slowly destroying her.
One occasion even saw doctors advise her mother to get the tot baptised, so convinced were they that she would not live more than a few days.
“It was just every mother’s worst nightmare,” says her mum Cyndi, 22. “I struggle to remember one day from the next. It was just a constant battle to keep her alive.
“All we knew was that she was dying, all her hair was falling out, her skin was shrivelling up, she looked like a Third World child.”
But at three months old she was seen by a visiting paediatrician at Manchester’s Pendlebury Children’s Hospital, who diagnosed Severe Combined Immunodeficiency (SCID), a very rare condition resulting from a gene defect which had left Elle with no immune system.
She and Cyndi left their home in Warton, near Preston, to go to the Children’s Bone Marrow Transplant Unit in Newcastle, one of only two centres in Britain with a hope of saving her.
Her grandmother Sherry, 50, who still lives at the family home, remembers: “Effectively, she had so few cells that those she had to fight infection had recognised her body as the infection and were attacking that.
“They said they could not do a bone marrow transplant on her because she was too poorly, so a stem cell transplant was her only hope. We waited and waited for a donor and one never came.
“Then there was one from Milan, Italy, which only had seven of the 12 matches they needed. It was a real mismatch but the doctors decided they could not wait any longer.”
What followed was weeks of aggressive chemotherapy on the tiny six-month-old to kill off her old cells.
Then there was a major operation to give her new cells which would develop into a new immune system.
But it was a waiting game with Elle living in a sterile “bubble” to protect her from any kind of germs.
Measuring eight feet square, the bubble became Elle’s “home” for the duration of her treatment as even the common cold passed on by her mother’s kiss could have been fatal.
It was during this time that the family got to know the Bubble Foundation, a charity set up to help keep these £2,000-a-day facilities running and provide halfway houses for mothers and babies, plus social care and educational support.
The survival rate of the unit has increased from 50 per cent to 80 per cent in the past five years.
Cyndi says: “I just don’t know what I would have done without them, I would not have been able to do it without them.”
Now five-and-a-half, Elle will join her mum and grandmother at their first fund-raising event for the charity, a family fun day at the Catherine Beckett Community Centre in Deepdale Road, Preston, on Sunday.
Stretched across the outside of that building will be huge poster of Elle as a baby with the words, When A Kiss Can Kill.
As the ever-smiling youngster insists on being asked a question too, after seeing her mum and grandmother take centre stage in the interview, I ask what she would like to say to the charity which helped her get better. She flashes a toothy grin and says: “Thank you.”
The fun day, including a bouncy castle, climbing wall and face painting, runs from 11am until 3pm. For further details or to donate to the Bubble Foundation e-mail: firstname.lastname@example.org