New mum speaks of sick baby heartache

Reporter:

Hayley Collins

A NEW mum has spoken of her heartbreak after her baby was diagnosed with cystic fibrosis at just four weeks old.

Michelle Challinor, 32, and her husband Lee, 35, from Connah’s Quay, were stunned to be told their daughter Alyssa, who is now 11-weeks-old, had the life-threatening condition.

Michelle has decided to share her story as the Cytic Fibrosis Trust launches its Gene Therapy Appeal.

The charity has until the end of next month to raise £6 million to fund an innovative gene therapy trial.

Michelle said: “For the first half an hour after I was told I was in shock and it didn’t really sink in.

“It was when I heard that she could die early that it really hit me. Half of cystic fibrosis sufferers don’t live past 30.

“It’s really hard and I’m still trying to get my head around it all.”

Cystic fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus making it hard to breathe and digest food.

Baby Alyssa has to be fed a cocktail of drugs everyday, including antibiotics and vitamins, in a bid to keep her healthy.

The inherited condition is contracted from your parents and unbeknown to Michelle and Lee they were both carriers of the mutated gene.

Michelle added: “We had no idea we were carriers and we can’t find any history of it in our family.”

The UK CF Gene Therapy Consortium, funded by the Cystic Fibrosis Trust, has been working for 10 years to find a way of inserting a healthy gene into a CF patient's lungs to ensure the damaging effects of the faulty CF gene are stopped in their tracks.

They are now ready to test the product on patients in a multi-dose clinical trial which aims to determine whether this new treatment works and the charity is pushing to raise the money needed to fund the trial.

Michelle is hoping the groundbreaking research could one day provide a cure for Alyssa.

She added: “I am just hoping that in Alyssa’s lifetime they will be able to provide a cure for it.

“I want to raise awareness of cystic fibrosis and make people aware of the money the Cystic Fibrosis Trust need to raise.

“I’m desperately hoping this research will benefit my daughter.”

Matthew Reed, chief executive of the Cystic Fibrosis Trust, said: "We have to date raised well over £30 million to develop this ground breaking treatment which has the potential to lengthen a CF patient's life by many, many years.

“We are hoping the funding for this trial will be made available to us by October 31 so we can give thousands of families throughout the world hope in achieving a better and longer life." To make a donation to the Cystic Fibrosis Trust visit www.cftrust.org.uk.

See full story in the Leader

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