Xmas campaign to help dying children and their families

Lisa Jaxon and Anthony
Lisa Jaxon and Anthony

This month, Children’s Hospices Across Scotland (CHAS) launches their biggest-ever fundraising appeal; urging Scots to support dying children and their families this Christmas.

Many people are facing Christmas apart this year but for families with a dying child, spending Christmas alone and without support is lonely and frightening. Now more than ever, CHAS is determined to reach every single child who needs their help and ensure that no one has to deal with this terrifying heartbreak alone.

The CHAS Christmas appeal, which includes a radio advert and the charity’s first-ever television advert, is launching Scotland-wide and hopes to build on the success of their summer campaign that saw Scots stand with those in greatest need. These powerful adverts depicts the grief faced by families whose children die young, with the TV ad featuring a real hospice nurse that works for the charity.

Little Jaxon Stars from Aberdeen was just one of the children supported by CHAS.

Jaxon was born just two days before Christmas Day in 2016 with a rare form of epilepsy called Ohtahara Syndrome, and a neurodegenerative disorder called Pontocerebellar Hypoplasia. The tiny tot was missing part of his brain, and he would suffer from seizures.

Jaxon’s mum Lisa, said: “As soon as Jaxon was born, the joy I felt quickly turned to fear. Instead of spending his first Christmas at home with his brother Antony, my beautiful baby spent the first four months of his short life in hospital. Thankfully, this was where CHAS stepped in.”

When in hospital, Lisa was told about CHAS at Home and Rachel House, where the family could go for some respite by CHAS nurse, Val Sullivan who helped look after Jaxon until the day he died.

Lisa continued: “In November 2017, Jaxon became very unwell. Thankfully, with CHAS just a phone call away, he could spend Christmas at home and not in hospital.

“That Christmas with Jaxon was just magical. We had a colourful tree, silly Christmas jumpers, tinsel and lots of sparkles. Jaxon got lots of Christmas cuddles from us all, and we had so much fun together. It was so special because the previous Christmas, I hadn’t been allowed to hold my new-born baby, or even touch him in his incubator.

Sadly, Jaxon died on 9 February 2018, aged just 13 months old.

Lisa said: “I was heartbroken but so glad to be at Rachel House when Jaxon died. We were among family. They understood my heartache and helped me find strength to pick myself back up again.

“But there are still so many families like mine, facing the death of their child alone. I can’t imagine how desperately difficult that must be. My baby Jaxon was the most special Christmas gift imaginable and when the time came to let him go, CHAS made sure I wasn’t alone.”

Recent research shows there over 16,700 babies, children and young people in Scotland living with a life-shortening condition. The charity is on an ambitious mission to reach every single family going through the terrifying heartbreak of seeing their child die young.

Throughout the pandemic, CHAS has had to dramatically transform the way in which it operates. In March, the charity launched the first ever virtual children’s hospice, and Rachel House in Kinross and Robin House in Balloch continue to provide end of life care.

CHAS at Home nurses have never been in greater demand, supporting families across Scotland who are having to self-isolate or stay at home.

Through its virtual hospice, CHAS families are offered extensive support by phone and video on clinical guidance, financial advice and bereavement support. The charity’s dedicated family support teams also offer a range of interactive activities, art clubs, storytelling and friendship calls to children and parents.

Iain McAndrew, Director of Fundraising and Communications at CHAS, said: “This campaign marks the biggest we’ve ever launched and given the challenges of this year, one of the most important. The pandemic has seen our income decrease, with so many of our traditional fundraising activities cancelled, whilst the need for our services is increasing.

“We’ve had to adapt our services and adapt fast. None of this would have been possible without our supporters who give love and strength to those in greatest need.”

“This Christmas, we are calling on everyone who can to support Scotland’s most vulnerable children and help keep the joy alive even in the face of death.”

To make a donation visit the CHAS website.