FOR MOST families, Christmas is about presents, a scrumptious dinner and lounging on the sofa together in the warmth and comfort of their own home.
But when one of your children has a life-limiting illness, special occasions are often celebrated on a hospital ward.
Hospices like Martin House, Boston Spa, Forget Me Not, Huddersfield and Bluebell Wood, Sheffield, which this year have together been The Yorkshire Post’s charity of the year, aim to make Christmas as special for families of children with life-limiting illness as it is for families as healthy children.
For the Wilson family just knowing Forget Me Not is there is a lifeline.
Thomas was born in February 2014 and it soon became clear to his mother Leah and father Johnny that their precious baby was very poorly.
After spending his first six months in hospital, Thomas was diagnosed with a life-long condition which results in breathing difficulties and his parents were given the devastating news there was no cure.
His mother said: “Thomas’ condition means that he has to have his ventilator to hand at all times and needs it whilst sleeping or just taking a nap; we are up constantly throughout the night to reposition him to help with his breathing. You’ve got to be alert 24/7 and even then there can be times where you can’t do anything; it can be exhausting and make you feel helpless.”
She added: “We will be spending Christmas this year at home. It gives us such peace of mind just knowing that Forget Me Not Children’s Hospice are just a phone call away throughout the festive season. It has been a difficult year for our family but with the support of our friends, family and Forget Me Not we know that Christmas 2016 will still be a memorable and magic occasion for us all.”
Forget Me Not also hosts an annual families’ Christmas party and this year around 100 children and families were entertained with festive fun, carols, games and, of course, the opportunity to meet Santa Claus himself.
“We attended the Christmas party earlier this month and it was just wonderful. Thomas loved all of the activities, having the opportunity to play with other kids and it was great for us too to meet up with other mums and dads and share our experiences,” said his mother.
For the Booth family a Christmas Eve visit to Martin House is also a highlight of their festivities.
Last year, they were able to share their very first Christmas together at home in Sowerby Bridge, West Yorkshire, but know that at any moment they could face a stay in hospital.
Five-year-old Matilda has spina bifida and is paralysed from the chest down. She also suffers from intestinal failure and hypoglycaemia and is given food and fluids via a special line in her heart.
Matilda’s older sister, Daisy, is 19 and is also supported by Martin House. Daisy suffers from severe cerebral Palsy, hydrocephalus, and epilepsy and is blind. She has been supported by Martin House for over 16 years.
The girls’ mother Sharon said: “As a family, one of our Christmas highlights is coming to Martin House on Christmas Eve.
“This is something we have done for years, only usually we come from hospital and have to go back.
“It is part of our Christmas tradition and it gets the adults and children into the Christmas spirit.
“It’s lovely to see other families there on the day who we have made friends with during our stays – it’s almost like an annual reunion.”
• The Yorkshire Post has this year been raising money for the three Yorkshire children’s hospices.
Every year the hospices need to raise £13.3m in total because only 10 per cent of their funding comes from the Government.
Our appeal could make a huge difference by providing nursing care, a vital break or support at home for families in the most difficult situations.
If you want to donate send a cheque, made payable to Yorkshire Children’s Hospices’ Appeal, to: Kayla Lindsey, Yorkshire Post, No 1 Leeds, 26 Whitehall Road, Leeds, West Yorkshire, LS12 1BE.