The death of wee Oscar Knox in the Northern Ireland Children’s Hospice earlier this month, has touched the hearts of thousands of people throughout the world.
The brave five year old finally succumbed to his battle with cancer at the Hospice two weeks ago - surrounded by his family - who were supported until the very end by the team of nursing staff who make the Children’s Hospice a haven for those families caring for children with serious and life limiting conditions.
Wendy Mount from Derry has some idea of what the Knox family are going through - she too has lost a child. Her son Eoin Sheerin had not long turned three when he died due to complications related to his disability.
And like ‘Wee Oscar’, Eoin also passed away in the Children’s Hospice - an experience which has prompted Wendy to train to work with the charity.
“Eoin was born with Spina Bifida, Hydrocephalus and chiara malformations,” Wendy explained. “I was told when he was born that he would not survive - but he did. And he kept fighting.!
Wendy was first made aware of the Children’s Hospice shortly after Eoin came home from hospital. Understandably, at that time she did not feel strong enough to consider Hospice care for her son. “We have certain notions of what Hospice care means - and I didn’t feel I could have that for Eoin. But when he was 15 months old, one of the other mammies told me just to look at it. To see that it was different.”
And it very much was. Currently providing support for more than 70 local families the Hospice offers respite care not only for children with disabilities or illnesses - but also for their families.
Wendy said it was very much a “lifeline” to her when Eoin was alive. “I was a single parent so it gave me the support that perhaps I didn’t have elsewhere. And it was there for me when I felt I didn’t want to burden my family more.”
A place of both very happy and very painful memories, it’s not surprising Wendy feels a strong bond with the Hospice and with the people who were there for her during her darkest hour. Currently working as a care assistant - and also providing Hospice at Home care for local families, Wendy plans to study for her nursing degree and continue working with sick children.
In many ways her experience is similar to that of Anita McDowell, whose son Marc was the original poster-boy for the Hospice fundraising campaign in the lates 90s.
Marc was just an infant when she was diagnosed with Tay-Sachs disease - which is very rare in this part of the world. His image was used on fundraising posters and on the pink ‘black taxi’ which was driven around Derry asking people to Buy a Brick.
“Marc died when he was 18 months old - but in that time he touched a lot of lives,” Anita said.
While Anita had always wanted to care for sick children, Marc’s passing strengthened her determination to give something back to the Children’s Hospice.
She continues to work for them to this day - 15 years after Marc’s death - and says she could not imagine doing anything else.
“I don’t know how I do it, sometimes,” Anita said. “I break my heart every time a child dies. It tears me apart but then again, the day I don’t get attached to the children I care for is the day I should finish.
“Any wee reward makes a difference. Be it a smile or a hug - anything at all can keep me going. And if I can make any difference to their lives and the lives of their families then I have been privileged - because I know how hard it is first hand to go through such an experience.”
Ella O’Connor, who is due to turn 10 in July, is one of the children who Anita has cared for during her years nursing.
For Ella, who was born with Ohtahara Syndrome, and her family the Children’s Hospice has proven to be invaluable.
Ella’s mum, Cindy, explained her daughter’s condition: “Ohtahara syndrome is a severe form of epilepsy - and Ella is also significantly developmentally delayed.
“I knew as soon as she was born that something was wrong - but it was ten weeks before she diagnosed. Back then she was having hundreds of seizures a day - but thankfully they are a more under control now.”
Her condition means that Ella is tube fed and is prone to chest infections - which pose a very serious risk to her. But according to Cindy the family consider themselves “very lucky”.
“Ella is very happy and we are very lucky to have her. We feel blessed.” Cindy, her husband Gareth and Ella’s two brothers Ben and Matthew benefit from the Hospice just as much as Ella, she said.
“When we had the diagnosis we thought, this is the end of life as we know it. The Hospice allows us to escape and to have a break. To have people take over for a wee while - to take control- it gives you a mental release. I don’t know where I would be today without it.”
Ann-Marie Tuffy’s 10 year old son Sean, who has a number of complex health needs, also attends the Hospice.
Her entire family benefit from the weekends’ respite care they receive - and also from the Hospice at Home services.
“The Hospice not only gives Sean time out but it gives our other children time to have quality time with us - something which would ordinarily be impossible.
“Our other children Ciara (14) and Eoin (13) look forward to it so much - it’s a place where we all get a break and we all just get to switch off and relax for the weekend.
“It’s a chance to switch off for all of us.”