Monday 19 November 2018

'Our Christmas wish is to be together as a family' - How Ireland's only children's hospice is helping families with sick children

Andrea and Padraic Smith, with their children Aoibhinn (9), Joseph (6) and Jake (3) Photo: Shane O'Neill, SON Photographic
Andrea and Padraic Smith, with their children Aoibhinn (9), Joseph (6) and Jake (3) Photo: Shane O'Neill, SON Photographic
Andrea and Padraic Smith, with their son Jake (3) Photo: Shane O'Neill, SON Photographic
Andrea and Padraic Smith, with their son Jake (3) Photo: Shane O'Neill, SON Photographic
Andrea and Padraic Smith, with their children Aoibhinn (9), Joseph (6) and Jake (3) Photo: Shane O'Neill, SON Photographic
Catherine Devine

Catherine Devine

Ireland’s only children's hospice is helping terminally ill children fulfill their Christmas wish this year of spending time with their families during this festive season.

Dozens of Ireland’s terminally ill children will be spending time this Christmas season at the LauraLynn Childrens' Hospice, but staff are ensuring that the tots and their families have a Christmas to remember.

Jane and Brendan Mc Kenna founded the hospice in 2001 after their two daughters Laura (4) and Lynn (15) passed away from life limiting conditions, 20 months apart from each other.

This year, more than 180 children and families have used LauraLynn’s service from across Ireland.

LauraLynn Childrens' Hospice, Leopardstown Rd. Co. Dublin. Photo: Doug O'Connor
LauraLynn Childrens' Hospice, Leopardstown Rd. Co. Dublin. Photo: Doug O'Connor

Sarah O’Callaghan from LauraLynn told Independent.ie that staff try to make the hospice as bright and colourful as possible to make it feel like home for families.

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Sarah O'Callaghan

“This Christmas we’ll have many families in the hospice so we’ve decorated the place with Christmas trees and lights and we’ve painted snowmen and Santa on the window. Santa himself will be making an appearance at our Christmas party. These things make the children feel like they are joining the Christmas celebrations.”

LauraLynn Childrens' Hospice, Leopardstown Rd. Co. Dublin. Photo: Doug O'Connor
LauraLynn Childrens' Hospice, Leopardstown Rd. Co. Dublin. Photo: Doug O'Connor

The hospice caters for all children up until the age of 18 and offers a wide range of services from medical care and therapy to bereavement counselling.

It also provides at-home care services so children can receive medical care in their own homes.

LauraLynn Childrens' Hospice, Leopardstown Rd. Co. Dublin. Photo: Doug O'Connor
LauraLynn Childrens' Hospice, Leopardstown Rd. Co. Dublin. Photo: Doug O'Connor

“Children are referred here if they have a life-limiting condition and are unlikely to live to adulthood.

“We cater for the entire family’s needs so they can prepare for what is ahead. We have special bedroom suites upstairs where families can stay over and be with their children.

LauraLynn Childrens' Hospice, Leopardstown Rd. Co. Dublin
LauraLynn Childrens' Hospice, Leopardstown Rd. Co. Dublin

“Especially at Christmas time families just want to be together,” said Ms O’Callaghan.

Nurse Sarah Bradford told Independent.ie that the staff try and put fun and love into children’s lives at the hospice.

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Sarah Bradford Photo: Doug O'Connor

“Christmas time is a sad and happy time for a lot of families. It’s the bitter-sweet because some families have been bereaved and they come back with siblings to the Christmas parties to remember the child they lost. It’s also a happy time when the kids are excited about Christmas and we try to incorporate the whole family into the fun.”

The Smiths are one of many families who will be spending time in the LauraLynn Childrens' Hospice this Christmas.

Andrea and Padraic Smith have three children Aoibhinn (9), Joseph (6) and Jake (3).

Their lives were turned upside down when their youngest child Jake was diagnosed with a devastating illness shortly after his birth in 2014.

On Christmas Eve 2014, the Smith family were given news that no parent ever wants to hear.

Jake had a large mass on the brain, a tumour and it was roughly the size of a grown man’s fist, and occupied almost half his skull.

The tumour was removed five days later by the surgeons at Our Lady's Children's Hospital Crumlin.

Andrea and Padraic Smith, with their son Jake (3) Photo: Shane O'Neill, SON Photographic
Andrea and Padraic Smith, with their son Jake (3) Photo: Shane O'Neill, SON Photographic

Jake Smith was diagnosed with Glioblastoma Multiforme (GBM), one of the most aggressive forms of brain cancer and found very rarely in children.

Even though the tumour was successfully removed, Jake continued to be afflicted by a litany of conditions: hydrocephalus, a swelling of the brain; multiple seizures; eating problems; temporary paralysis of his right side; issues with his sight and hearing; acute pain; and much more.

Mum Andrea said that the strain on the family has been immense.

“Jake needs constant 24/7 care. While one of us is caring for him, the other is looking after our two other children, who are seven and nine: bringing them to school, sports games, plays. That leaves no time left for us to live our own lives - there was one point where I counted two and a half weeks before I could leave the house,” Andrea told Independent.ie.

The couple’s two other children have suffered from separation anxiety due to their parents being away from home for days and even weeks at a time; even now they get upset whenever they see any of their parents packing a bag. Birthdays, holidays and special occasions that so common to other families have been missed or deferred.

“Padraic and I have to play so many roles: in addition to a mother and father we each also act as caregiver, physiotherapist, teacher, entertainer, and speech and language therapist. After a while you become so isolated - people stop coming to the house and you miss out on what’s going on in the world."

The family have praised LauraLynn saying their quality of life has improved dramatically.

A LauraLynn care nurse calls regularly to the Smith family home in Cavan to give them a few hours free time for family activities that are often taken for granted, such as a lunch out, a visit to the dentist, or an afternoon choosing a communion dress.

They also make use of the LauraLynn Hospice itself in Dublin – not only does the family get to experience a wider range of cultural and leisure activities than their home town, but Jake himself also has the opportunity to play, explore and learn with other LauraLynn children.

“When we initially got in contact with LauraLynn we were put on the homecare package, which was a complete breath of fresh air. For the few hours the nurse was minding Jake we could get out of the house and do our weekly shopping, prepare our children’s school lunches, maybe go for a coffee afterwards. These are just small, simple things to everyone else, but none of this was possible for us before LauraLynn became involved.

“The first time we used the LauraLynn Hospice in Dublin was for four days over the Easter holidays, and it was just amazing.  It was absolutely brilliant.  Jake was very comfortable with the nurses and he had his activities to do.  Our other two kids were spoiled rotten - they felt so special and they had fun games and arts and crafts. We could go to the park as a family and totally relax - we didn’t have to worry about medications or machines. All we had to do was totally unwind and sleep.”

Andrea said that having a sick child is especially hard during Christmas time.

Andrea and Padraic Smith, with their children Aoibhinn (9), Joseph (6) and Jake (3) Photo: Shane O'Neill, SON Photographic
Andrea and Padraic Smith, with their children Aoibhinn (9), Joseph (6) and Jake (3) Photo: Shane O'Neill, SON Photographic

"Having a sick child at Christmas means that it’s not possible to do many of the things that most other families might take for granted. We can’t, for example, spend Christmas visiting friends and relatives, nor can we go to busy public places, such as visiting Santa at a shopping centre or go to see the Wild Lights at Dublin Zoo.

"However with the help of LauraLynn we have been able to reclaim some traditional Christmas family activities while the staff at the hospice take care of little Jake – for example we can now go present shopping together as a family, or visit Christmas events during the daytime. Meanwhile in the hospice the staff take great care of Jake and arrange lots of fun Christmas activities for him – Santa is even known to call in around this time! LauraLynn really helps us fulfill our Christmas wish which is to be together as a family at this wonderful time of the year."

To find out how to donate to the LauraLynn Hospice you can visit https://lauralynn.ie/how-to-help/donate/

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