Stories of Matilda and Esmée inspire Halifax store to fundraise for Cystic Fibrosis Trust

The collaboration with Harvey’s was organised by parents Louise Shaw, mum of one-year-old Matilda, and Samantha Jayne Scott, mum of three-year-old Esmée, who also suffers from Cerebral Palsy.

Cystic Fibrosis is a life shortening genetic condition. Only half of people who have it will live to celebrate their 40th birthday

Two million people in the UK are carrying the faulty gene without realising it.

The condition slowly destroys the lungs and digestive system, making it hard to breathe and digest food.

Both Matilda and Esmée take several doses of medication every day due to the condition.

Louise said: “Matilda showed no symptoms for her first few weeks, but we were visited by a nurse and a health visitor, who told us about Matilda’s diagnosis, which was discovered from the heel prick test that is given to all newborn babies.

“It was a total shock. She showed no symptoms before and I don’t think words can describe how we felt. We held Matilda tight and cried for our little girl; how could this be fair or right?

“The nurse was amazing and gave us plenty of time and explained in great detail what exactly it was and that, although there is no cure, Matilda could still lead a normal life.

“Me and my husband are both carriers of the gene, named Double Delta F508.

“Matilda is so amazing and beaming with happiness she doesn’t let it get in her way. She’s looks and acts just like a normal little girl and is such a cheeky character.

“Matilda doesn’t have a voice yet to ask for help or make awareness of her condition. So as her mum, I want to help her, and the only way to find a cure is to get the funding to the trust. So my job right now is to help the trust find the funds.”

Harvey’s will be collecting money throughout November but there will be a specific awareness day on November 29 where Louise and Samantha will be in attendance along with their festive tombola to greet shoppers.

Samantha said: “We support cystic fibrosis because our daughter has it, but she is doing amazingly.

“She was born premature at 30 weeks, and we found out about the condition when Esmée was just three weeks old.

“It was a shock but we have got used to all the physio and medication.

“Esmée had the mutations from me and her dad. The mutation I carry means that Esmée can have a drug called ivacftor or kalydrco, which she started taking on her second birthday.

“This has brought Esmée’s sweat test down from 90 to 16, which is amazing and this meditation will hopefully help her lungs stay clearer and stop her catching as many infections.

“Esmée is fed all liquids via a button in her tummy due to her also having cerebral palsy and an unsafe swallow, but this has helped us get lots of high calorie milk down her and all her meds, helping her amazingly with weight gain.

“We did Cystic Fibrosis fundraising at my daughter’s christening, and we also did a raffle and raised money in Cystic Fibrosis week in Esmée’s grandma’s shop The Chocolate Box in The Piece Hall.”