'˜The Children's Hospice is our security blanket'
A local family which has benefitted from the '˜invaluable' work of the Children's Hospice, is to hold a fundraising event to '˜give something back'
For the last five years the Children’s Hospice, based in Newtownabbey, has become a ‘home from home’ for the McCallion family from Derry.
Kathleen and Sean’s youngest daughter, Seanain, was born with multiple conditions- 17 in total - including Spina Bifida and Hydrocephalus.
As parents of two healthy daughters, the couple had no reason to expect that their youngest would be any different.
However, the conditions were picked up on a pre-natal scan and because of the complex nature of them, Seanain was delivered by casearean section in Belfast.
At one day old, she underwent the first of many surgical procedures on her spine.
Ten days later, Seanain had a shunt inserted to drain excess fluid from her brain and spent much of the first six months of her life in and out of hospital.
Kathleen and Sean were torn between Belfast and their other two daughters, Chloe and Grace, back home in Derry.
Seanain, who is now six-years-old and a pupil at St Eithne’s Primary School, requires round the clock care.
She is paralysed from the waist down and received her first wheelchair when she was just one and a half years old; requires oxygen through a venitlator at night and is tube fed.
“Seanain had feeding problems from birth and her Oesophagus had to be disconnected from her stomach completely. She will never eat, but we would rather have her here not eating than risk it, because it would be very dangerous,” mum Kathleen explained.
Despite all her conditions, the family were determined it would never hold Seanain back.
“She is just a breath of fresh air and doesn’t see herself as any different,” Kathleen added.
“She just gets on with it. “We have always been very up front with her about her conditions and about any of the procedures she has to have. We explain everything to her or, if we can’t, we would look up videos and show her just to keep her in the loop.”
The six-years-old followed her sisters to St Eithne’s PS, something that the family had always hoped would be possible for Seanain and Kathleen heaped praise on the school.
“It is just brilliant. Everybody in the school loves her and she has the most amazing classroom assistants.”
Kathleen describes her daughter as an ‘absolute star’ who loves to be centre of attention and can often be found making her school mates watch as she performs pirouette’s in her wheelchair.
However, because of her conditions, Seanain is susceptible to infections and is a ‘frequent flyer’ in the children’s ward in Altnagelvin and as an inpatient at the Royal Belfast Hospital for Sick Children.
For the last five years the family have been attending the Children’s Hospice to get a break from their routine.
Seanain attends the hospice three times a year and is due to go again next month for four days.
This allows Kathleen and Sean will get some precious time together or to spend time with their other children.
“It is our security blanket and is a home from home.”
Kathleen said attending the hospice was difficult to begin with, but it is now somewhere the family feel ‘totally at ease’.
“We can go as a family with all the girls or Seanain can go on her own. The staff treat Seanain like their own child and the love they have for all the children is unreal.
“We know that when she goes to the hospice she is in great hands they have a doctor on site and there are so many nurses there.
They can do everything we would, give Seanain her medication and work all the different machines that she needs.”
Kathleen said that Seanain loves attending the hospice because she gets totally pampered there.
“She gets massages and her nails painted; goes on special trips and does all different kinds of activities. Seanain also gets to use the hydrotherapy pool while she is there.”
The six-year-old loves the place so much she became a mascot for the Children’s Hospice in the north west.
“It breaks my heart how much money they need to provide such a vital service. The staff there care for 300 infants, children and young people each year and it costs £3.82 million to run the services.
“It costs £30 per hour for hospice care at home. £81 for two hours of complete care at the hospice and £243 for six hours complete care at the hospice.”
Kathleen said the work done by the hospice is ‘completely invaluable’ for sick children and their families.
“The hospice lifts a massive weight off people’s lives who are caring for a child with a serious illness. The hospice is not all about death, in our experience it is about anything but.”
The family decided that now was the time to give something back to the Children’s Hospice and Kathleen has been planning a fundraising night with the help of her mother-in-law.
“We are planning well in advance, as you have to when you have a sick child!”
The event will be held on February 23, 2019 and Kathleen hopes it will be a great night out which will raise plenty of money for the Children’s Hospice.
She is appealing for local businesses to help out by donating raffle prizes.
“We have already received many generous donations, but you can never have enough as we want to raise as much money as possible for the Children’s Hospice to help them continue caring for sick children.
“The hospice also helps so many families here in the north west and to see how they treat each and every child really does pull at the heart strings.”
To get involved or to donate a raffle prize contact [email protected]