Parents of children with cancer visit the Dáil

A group of parents of children with cancer travelled to Leinster today to brief TDs on the practical difficulties of providing love and support for their children, while also mopping floors, making dinners and maintaining a sterile home.

The parents want TDs and Senators to help “grow” a regional charity in the west of Ireland called Hand to Hand, into a national organisation which is better placed to attract funding from government and from commercial enterprises.

Hand in Hand was founded in Galway in 2006 initially to support the family of a two-year-old girl who was receiving treatment for leukaemia in Our Lady’s Children’s Hospital, Dublin.

The organisation now covers eight counties and claims to be the only voluntary organisation that supports children and their families through cancer treatment.

Services provided include collecting patients’ siblings from school or crèche while parents are at work or are taking a child to hospital. Hand in Hand volunteers who are Garda vetted also take of transport to after school activities and mind children until a parent returns home from work or a hospital visit. The charity also arranges domestic cleaning and laundry.

Hand to Hand spokeswoman Jennifer Carpenter said the charity wanted to establish on a national footing. “Large commercial organisations tend not to deal with regional charities so we need to be a national charity to attract funding from corporate donors such as Tesco” she said.

She said Hand in Hand had made a difference in the lives of families at difficult times - including the family of eight-year-old Karol Burzynski from Athenry who was in treatment for over three years.

He is now “doing fantastic”, she said. Ms Carpenter also mentioned seven-year-old Meagan Maher Daly from Co Clare who has still got another year of treatment to go and whose family is currently being supported by Hand in Hand.

John Cloonan from Athenry Co Galway said his son Brogan - who is now aged nine - went through six months of intensive treatment in a Dublin hospital at just two years of age. This was followed by a year and half of less intensive treatment and “were there all the time”, said Mr Cloonan.

Deirdre Lennon Herbert from Clonsilla in Dublin said her son Ben (7) has been receiving cancer treatment since 2012 and will be receiving this treatment until August 2015. As Ben has an intravenous line near his shoulder, he needs to me kept in a very sterile environment as he could easily pick up infections which would be very dangerous for him.

“He had chicken pox at Christmas” said Ms Lennon Herbert who added it was difficult for her “because I work, my husband is Ben’s full time carer”. Ms Lennon Herbert said taking Ben on school trips or letting him go on other outings was also difficult. Time had to be divided between mundane tasks like doing the ironing or mopping floors, or taking Ben on outings. Sometimes she had to decide he just couldn’t go. “Nobody should have to do that. Nobody should have to make those sort of decisions,” she said. Some 250 children a year contract cancer in Ireland, she added. “It is not a rare disease,” she added.

Fidelma Healy-Eames, who arranged the visit to Leinster House for the parents to meet politicians, said families needed practical help “to spend precious time with their children rather than trying to keep on top of household chores”.

Roscommon TD Denis Naughten said the issue was not one of money. “The money is there in the Primary Community Continuing Care service, but there was an issue of how each PCCC around the country spent its allocation.

“You could have an area like Roscommon where resources may be spent by November and another area like Longford where there may be resources underused by that time. But resources can not be transferred on a national scale so if there is a need for a resource in Roscommon, and that resource is available in Longford, it can not be transferred,” he said.

Mr Naughten added that he has asked Minister for State Alex White to look at unblocking the resources on a State-wide basis.