For Jacob Leighton’s parents, caring for him means constantly being on alert for a serious medical emergency.
The three-year-old needs a tracheostomy tube to help with his breathing, which can need changing at any time.
His mum and dad Vanessa Robinson and Stephen Leighton are his full-time carers, and for them to have any time out, they must have support from specialist nurses.
They’re now backing a new fundraising campaign to support the Yorkshire hospice which provides that expertise and gives them a much needed break.
“In July 2014 we found out about Forget Me Not Children’s Hospice in Huddersfield and the support they offer to families,” Mr Leighton said.
“We met with two of their nurses who explained to us about the support they can offer and we were so grateful to hear of this service being available to us.
“It can be hard being like a full-time carer 24/7 and this news just felt like a big relief.”
The Yorkshire Children’s Hospices Appeal, led by the Yorkshire Post and supported by its sister publications across the region, is aiming to raise a total of £30,000 to be shared between Forget Me Not, Bluebell Wood in Sheffield and Martin House in Boston Spa.
The money will help continue the vital work of the hospices in supporting the families of children with life-shortening conditions.
Jacob, who was born with Down’s syndrome, stopped breathing at his home near Wakefield when he was just a few weeks old and his dad had to perform CPR. Paramedics later told him that without his actions, they wouldn’t have been able to save Jacob.
After two days in Pinderfields Hospital in Wakefield, the infant was discharged without a clear diagnosis, but two weeks later he had another apnoea attack and was rushed back there.
He was referred to Sheffield Children’s Hospital where medics still couldn’t work out what was wrong, but while there he had yet another attack.
“Jacob was eventually diagnosed with having a vascular ring which was applying pressure to his windpipe, ultimately making it difficult for him to breathe,” his dad said.
“He was then transferred to the Leeds Children’s Heart Unit where he was operated on.
“He was discharged on January 14 and we finally thought that Jacob would be able to move on from this difficult period of his early life.”
But a week later he had another terrifying episode at home and back at the heart unit, doctors had no choice but to insert a tracheostomy.
His mum and dad spent eight months staying in parents’ accommodation at Leeds General Infirmary and were told the attacks were due to Jacob’s windpipe being flat in several places.
Now the family have care at home from the hospice’s care team every other week, as well as staying there eight nights a year.
“Every other Friday the team come out to our house and look after Jacob. It is impossible to predict when he may need an emergency tube change so we have to be alert at all times,” said Mr Leighton, 49.
“Over the past two months we have had to do six emergency changes.
“I still get butterflies in my belly when doing one of these changes but try to remain calm, you get no prior warning so we are always on alert.
“The care from Forget Me Not Children’s Hospice allows us to have some time to ourselves and just take a deep breath and regroup, knowing Jacob is being cared for by a professional and friendly team who can handle any situation put in front of them.”
He added that their stays at the hospice’s Russell House allowed them to join counselling sessions as well as relax with complementary therapies.
“We stayed over at Russell House in their amazing parent suites and they couldn’t do enough for us – from newspapers to full English breakfast they really do provide exceptional care to the whole family,” Mr Leighton said.
“We take each day at a time, Jacob has good days and bad days but he is a very strong-willed little boy and we are always reassured in the knowledge that we have the support of Forget Me Not.”
The mum of a teenager who has had five major heart operations has praised the care at a hospice which “takes the weight off her shoulders”.
Saki Roussos looks forward to coming to Bluebell Wood Children’s Hospice in Sheffield, where he stays for respite, receives counselling and meets other teenagers in similar situations.
The 15-year-old said: “I love it at Bluebell Wood. I get to chill and I love talking to everybody here. Also, the food is amazing.”
Saki was born in Greece and came back to live in Barnsley when he was two.
He was born prematurely and was diagnosed with chronic lung disease and a serious heart condition. In addition, Saki has had several strokes, is on the autism spectrum and has a learning disability.
His mum, Sharon Roussou, of Smithies in Barnsley, describes Saki as “a fighter with a huge amount of determination.”
At just 50 days old, Saki underwent major surgery and since then has been under hospital care constantly, undergoing five major heart surgeries and three new heart valves.
The family first came to Bluebell Wood three years ago and Saki enjoys meeting other people there and taking part in a wide range of activities, including day trips out.
“It’s an environment where he forgets that he’s poorly,” his mum said.
For Ms Roussou, she says coming to Bluebell Wood is a “relief” as it means she can recharge her batteries knowing that her son is having fun and receiving excellent care.
“Coming to Bluebell Wood is just so calming and is such a friendly, warm atmosphere to walk into. You know the staff here will listen and help with anything.
“Life outside is busy - hospital appointments are constant. But when I’m here a big weight lifts of my shoulders. It’s a different world, you are just comforted and supported.
“What the hospice gives you is amazing – they should bottle the way that the staff support you as a family because it’s invaluable.”
• Donate to the appeal online. Or, 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. You can also download our donations pack, containing all you need to know to help the appeal.
• Are you supporting the appeal? Tell us about it via social media using #ychappeal or email [email protected]