Parents appeal for help to bring sick twins home
THE parents of seriously ill twin boys who have a "ticking time bomb in their heads" have not been able to bring them home because of a problem securing their home care package.
Denise and Dermot Guihen have appealed to the HSE and the Government for help in securing agreement for the €9,000 monthly care package as they feel they are being "robbed" of the precious time they have left with their sons.
Shay and Finn – who are two-and-a-half years old – were born with the extremely rare Pfeiffer syndrome, and spent the first years of their lives in hospital.
They are receiving care in a children's hospice due to problems with their homecare package, and their parents just want them home to spend time with them and their eight-month-old brother Reilly.
Mrs Guihen told the Irish Independent that "every day is absolutely crucial" with their children, who are being cared for around 30km away from their Co Kildare home.
She said that they know they are going to have to face the prospect of losing both of them as there is a "ticking time bomb in their head".
She said that every day they spend away from the family home is a day "robbed from us".
The young boys have shunts in their brain, and their breathing is assisted by tracheotomies.
The devoted parents were told that their two young boys would not live longer than three months, but the toddlers have continued to astonish everybody with their development.
Deputy Catherine Murphy raised the family's plight during Leaders' Questions in the Dail yesterday. She explained that in order for the twins to be in their family home, it is necessary that a 24-hour homecare package is put in place.
This €9,000 weekly package was eventually agreed upon last October. And Ms Murphy explained that it had been outsourced to a nursing agency, and that from the very first week they faced "problems".
"It was hit-and-miss and resulted in the twins being admitted to the Laura Lynn Children's Hospice for eight weeks until a care package could be provided," Ms Murphy said.
"Five months later, there is still no sight of a care package and the parents have not been included in the process in any meaningful way."
Taoiseach Enda Kenny, who met with the couple afterwards, said that it was the "most complex case that (the HSE) has come across in a very long time" and that they were "very familiar with it".
"It is a case now of working with a different agency to see if it is possible to put together a proper, sustainable home care package," he said.