A mum has revealed she is in the dark about her baby’s future after the little girl was born with a genetic disorder so rare that only two cases are known to experts.
Angela Chapman, 34, of Haynes Road, Northfleet, became concerned for Ellie’s health just hours after her birth.
But what she didn’t know was that her daughter was born with a genetic condition so unusual that experts cannot predict when she will be able to crawl, walk and speak.
Five weeks after she was born, Ellie was diagnosed with a rare chromosome disorder following blood tests.
Although her mum’s suspicions were confirmed, her condition remains a mystery as the family search for information about the effect of Ellie’s missing chromosomes.
A professor at Guy’s Hospital in London even told Ellie’s parents that only two cases were similar in the UK – emphasising how little is known about the condition.
Mrs Chapman said: “I thought there must be someone who can give me some answers.
“To this day I still hope I see something or hear something that will help me.
“Even when we found out what it was we thought there would be people you can talk to or information you can Google but I’m completely in the dark.
“I was confused and horrified when I got Ellie’s results.
“I phoned my husband. He was at work and we were both just lost for words.
“I couldn’t sleep: I was terrified something would happen to her.”
Mrs Chapman decided to speak out during Chromosome Disorder Awareness Week, which aims to raise the profile of conditions such as Ellie’s.
Looking ahead, Mrs Chapman says she has no idea what’s in store for her daughter.
While other mums and dads will wait for their children to start crawling or take their first step, Ellie’s progress will continued to be monitored on a day-by-day basis.
Mrs Chapman added: “She will reach these milestones a lot later than other babies.
“She is nine months now. She should be ready to crawl, but sometimes I think it’s not going to happen.”
She was recently given some hope when Ellie began sitting up, something her mother feared might not even happen.
But she added: “It’s such a dark future. I keep thinking: will she be able to run and play around like other children?”
At the moment, Ellie is receiving treatment under six specialists at various hospitals, with at least one appointment per week at home or elsewhere.
"It’s such a dark future. I keep thinking: will she be able to run and play around like other children?" - Angela Chapman
But the child has already proved her battling abilities after she spent more than a week in intensive care when she was just six weeks old.
Ellie was rushed to the Evelina Children’s Hospital in London after doctors discovered a build-up of mucus in her lungs, which led to pneumonia.
She made a full recovery although her condition means she is prone to bouts of respiratory illnesses.
Mrs Chapman said: “I’ve learned that appearances are really deceptive and that we take having a healthy child for granted.”
For more information on rare chromosome disorders such as Ellie’s, visit here.