TERMINALLY ILL TODDLER: Parents fight for precious Clara
The parents of a toddler who is one of 800 in the world with a fatal genetic condition are determined to fight for their '˜precious' daughter.
Clara Walsh, who is 19 months old, was born with Smith-Lemli-Opitz syndrome, an extremely rare disorder which has stopped many parts of her body developing since she was just a few months old.
But after five operations and new scientific developments, parents Sara Gardner and Christopher Walsh, of Hodder Avenue, Chorley, are optimistic and determined to support her.
The family is appealing to raise enough money to visit a conference in America which will be attended by experts able to give advice and possibly treatment for the disease.
Sara, 37, said she was left feeling sad and useless when doctors could not diagnose Clara for seven months whilst she was ‘very unwell’.
Sara said: “We had to feed her every hour through a tube but she would just keep vomiting.
“And every time we tried to feed her with anything liquid-based, she would really panic.
“It took all the enjoyment out of feeding her because she just wasn’t tolerating food.
“We were very concerned for her health because she was drained and pale in colour.
“And months later, she was still only 6lbs – she was 4lbs 7oz at birth.
“It is hard work when you have a child and you don’t see any change in them after seven months.
“We were very worried because we knew she was not getting what she needed to grow and have energy.
“And doctors agreed there was reason to express concern because she was not changing much at all.
“I waited a long time to be a mum and I want to do what I can to help her.
“And without that initial diagnosis it was hard.”
After a number of tests over several months, doctors discovered she had a problem ‘aspirating’, meaning fluids flood straight into her lungs.
“I felt physically sick when I found out,” said Sara.
“When she was coughing and vomiting it was because she was trying to clear the water out of her lungs.
“She could have drowned – and we’re so lucky that she didn’t.
“I realised how close I was to losing her and it made me feel terrible as a parent.
“She was going through this for so long and we didn’t know.”
Tests revealed the condition was down to a combination of faulty genes passed down from both parents, causing problems with her major organs.
Sara added: “Doctors said she would never be able to do anything.
“They thought she would probably just lay there and be really floppy or stiff and never be able to walk or talk.”
But despite the devastating news, Clara has already began shocking medics with unexpected developments.
Sara, who now cares for Clara full-time, said: “I push her as much as I can.
“She has physio every day – either at home or with a specialist.
“And she has just actually started to grow.
“She teaches me so much and she’s so happy in herself.
“I cherish every second with Clara and I always try and have as much fun with her as I can.”
Sara and Chris are now campaigning to fundraise £6,000 to travel to the conference in America.
The conference will be full of experts, parents of other children who are sufferers and there may be a chance to try out some treatment.
“The people at this conference know more than anybody else in the world,” Sara added.
“This is where we need to go to get the help and advice because it’s such a rare disease.
“It’s a big thing to have somebody else there who can understand what we are going through.
“I’m optimistic about it and it gives me something to do to try and help Clara.”
l For more information, visit crowdfunding.justgiving.com/clara-walsh.