Friday 22 September 2017

'CF awareness week will help get the necessary drugs for my kids'

Launch of Cystic Fibrosis awareness week & 65 Roses Day. Pictured at Herbert Park were Keelin Shanley RTE, Jessica (7) and Tom (9) Cassidy from Longwood, Co. Meath who both have Cystic Fibrosis. Photo: Douglas O'Connor
Launch of Cystic Fibrosis awareness week & 65 Roses Day. Pictured at Herbert Park were Keelin Shanley RTE, Jessica (7) and Tom (9) Cassidy from Longwood, Co. Meath who both have Cystic Fibrosis. Photo: Douglas O'Connor

Gavin White

A Meath mother who has two children with Cystic Fibrosis says she is hoping the national awareness week for the disease “will help get the necessary drugs down the line” for her kids.

Michelle Cassidy, from Longwood in Co Meath, is mother to Jessica (7) and Tom (9), both of whom have cystic fibrosis.

It was during a check for asthma at the age of two that CF was identified in Tom.

While CF has been present in Michelle’s wider family, she said she was "shocked" to realise Tom had the illness.

At the time, she was pregnant with Jessica, and when she was born, tests also found that she had cystic fibrosis too after 15 weeks.

Minister for Health Simon Harris has been in negotiations to obtain a new drug Orkambi which will help increase lung functions and reduce the effects of the disease.

"Orkambi will not help us unfortunately with the type of CF that the kids have but with this type of public awareness and funding we hope it can help us too in the future," she said.

Their daily routine in terms of managing cystic fibrosis involves chest physio, digestive enzymes, multivitamins and, for Tom, a nebuliser.

Tom had to spend a period of time in hospital on intravenous antibiotics to deal with an infection two years ago.

Michelle said: "Exercise is key and with this in mind Tom plays GAA and Jessica loves Irish Dancing.

"We received a grant from CF Ireland too which we have used to get the kids into swimming which has been a great help too."

She said Tom is also a football fanatic, and hopes to be a professional footballer when he grows up

Michelle has had to "cut back on the hours" that she works in a local pharmacy in order to look after the children, and their increased care needs.

CF National Awareness Week runs from April 10 to 16 and will see the flagship event for Cystic Fibrosis Ireland, 65 Roses Day, take place where people can buy a purple rose for €2 or donate online.

CF Ireland CEO Philip Watt said despite the hope for introduction of Orkambi there is further hope for more remedies in the future.

“It is also important to state that these drugs are the first in a pipeline of new therapies being developed that have the potential to transform the lives of people with cystic fibrosis."

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