A brave three-year-old girl who has undergone heart surgery and fought back from the brink of death multiple times now needs vital physiotherapy to prepare her for a major spinal operation.
Iyla Rose Harvey was diagnosed with Wolf-Hirschhorn syndrome just days after she was born. She spent the first six months of her life in hospital due to the genetic disorder, which affects different parts of the body, causing abnormalities and delayed growth.
The stricken toddler suffers physical global delay, sight, hearing and heart defects and epilepsy. At one stage she was suffering more than 100 seizures a day.
Iyla’s father Matthew Harvey, of Hazelwood Crescent, Little Clacton, works as a dispatcher for East of England Ambulance Service.
He said she has “come on leaps and bounds” since her initial struggle.
“We went through the pregnancy and everything was fine – we picked up on the condition when she was four days old,” he said.
“It is rare – apparently only one in 50,000 children are diagnosed with it. We were in Colchester General Hospital when she was born and apparently they only see one child diagnosed with the condition every 20 years.
“When she was first born there were initial concerns about her health, we were kept in for a few days. It was really the uncertainty that was the worst.
“You start thinking to yourself ‘what are they on about, she’ll be okay’ and you are in a stage of denial.”
The family were given some relief when they were sent home, only for disaster to strike when Iyla was just eight days old. She suffered circulatory and respiratory collapse and had to be rushed to hospital.
Matthew, 25, said: “We spent six months in various hospitals such as Addenbrooke’s and Kings College, she spent time in intensive care and had heart surgery.
“To say it was a stressful time doesn’t even come close, it was often touch and go. When we first rushed her to Colchester we were told to take photos of her as she likely wouldn’t last through the night.
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