DCSIMG

Difficult year for family following double diagnosis

WH 190414  Joanne and Neil and their children L to R Zachery 1, Archie 2 and Imogen 5. Zachery and Imogen have Cystic Fibrosis and they are raising money. Photo by Derek Martin SUS-140420-234122001

WH 190414 Joanne and Neil and their children L to R Zachery 1, Archie 2 and Imogen 5. Zachery and Imogen have Cystic Fibrosis and they are raising money. Photo by Derek Martin SUS-140420-234122001

A WORTHING mother has spoken of her difficult year after two of her three children were diagnosed with cystic fibrosis.

Life changed immeasurably for Joanne Jones and her husband Neil, of The Avenue, Worthing, when Imogen, five and Zachary, one, tested positive for the genetic disorder which affects the lungs.

They are hosting a Flashmob in South Street, Worthing, on May 17, to raise awareness of the Cystic Fibrosis Trust and a quiz and raffle night at The Vintners Parrot on May 18 to raise money for The Love Your Hospital Cystic Fibrosis Fund.

Mrs Jones, 31, said: “Imogen has been symptomatic over the years and we were back and forward to the doctors which chest infections, unexplained tummy aches and dips in her weight.

“She was generally not right and was never really at pre-school because she was always poorly but the doctors said that children often grow out of things and as a first- time mother I did not really know any different.”

Imogen tested positive as a CF gene carrier at birth but it was not until Zachary was diagnosed through the Sweat Test that she was tested again.

Archie, two, does not have the disorder.

Imogen and Zachary have three sessions of physiotherapy per day, each lasting 20 minutes, as well as daily medication and nebulisers.

Mrs Jones said: “I do not think it really hit home until Christmas. At the time, we took a deep breath, said we would cope and carried on as normal, but as time went on it got more scary hearing stories about young children needing lung transplants.

“I know that’s not the case with everyone and our children are fairly well but it is hard.

“When things sunk in, we did start to panic a little. Things have changed a huge amount.

“The children will need treatment for the rest of their lives but as they get older they will be able to manage it themselves in a variety of ways.

“Our focus is on keeping all of our children active and well.

“I think Imogen and Zachary in particular will have a very strong bond and Archie is really cute because he tries to help us give them physio.”

The family has been helped by the Love Your Hospital Fund at Worthing Hospital.

Mrs Jones said: “It is really important as we are at the hospital every month and each time the children need IVs they have to stay in hospital for two weeks.”

To donate, go to www.justgiving.com/Joanne- Jones24/

 

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