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Published by Scottish Council for Voluntary Organisations

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Brave youngster fronts new hospice charity appeal

 

Blake McMillan left his mark on the world thanks to the support of CHAS

The story of a brave little boy is being used to highlight the vital work a charity carries out.

Children’s Hospices Across Scotland (CHAS) has this week launched its summer fundraising appeal urging Scots to stand with dying children and their families, ensuring that no one faces the death of their child alone.

Telling the story of little Blake McMillan, who was cared for by CHAS throughout his short life, the children’s hospice charity has an ambitious mission to reach every family going through the terrifying heartbreak of seeing their child die young.

With recent research showing that over 16,700 babies, children and young people in Scotland are living with a life-shortening condition, now is the time to give these families the strength they so need.

The appeal, which follows on from their successful 2020 Christmas appeal, includes a national radio and television advert. The adverts poignantly highlight the unimaginable heartbreak that some CHAS families face now and in the future.

Blake McMillan and his family were just one of the many supported by CHAS. Mum Jenny was overjoyed when she found out she was expecting her second child and had a straightforward, healthy pregnancy giving birth to Blake on the 21 March 2012. But instead of being placed into his mother’s loving arms, the tiny tot had to be rushed away for tests after doctors detected something was seriously wrong. 

When he was three weeks old, Carnoustie boy Blake was eventually diagnosed with MECP2 duplication syndrome, a rare genetic condition that meant he would never be able to walk, talk, sit, crawl, or feed himself. 

Jenny said, “Doctors explained this was a condition that affected only seven people in Scotland and 25 across the UK at that time, although I believe there are more cases now. We were heartbroken. It was a lot to take in and accept."

When the brave youngster was just three-and-a-half his health deteriorated further and he was admitted to the Intensive Care Unit at Ninewells Hospital in Dundee before being moved to Sick Kids Hospital in Edinburgh. Jenny was advised Blake would now require end of life care which led to her being assigned a palliative care nurse. This was also when CHAS stepped in to help the family. 

“Despite our pain, it felt comforting to know CHAS were there for us and we had our first of many stays at Rachel House in February 2016.  Each time we returned to Rachel House I would breathe a sigh of relief as we walked through the front doors and our bags were lifted out of our hands. We were always made to feel so welcome.” 

As the years went on the family continued to have respite breaks at Rachel House and the hospice also played a special role in June 2019 when Jenny tied the knot with her partner, James.  

Jenny said: “We obviously wanted Blake to be at the wedding and Rachel House made this possible by looking after him and getting him to the venue. They even decorated his mobility seat and gave him a little horseshoe to give to me.” 

The hospice nurses helped to strap the seven-year-old to his doting mum using a special harness so they could have a special wedding dance together.  As Jenny cradled her son in her arms to Ellie Goulding’s touching song, ‘How Long Will I Love You?’ there was not a dry eye in the house. 

After the wedding Blake continued to battle his illness and his determined mum continued to make it her mission to find out as much as she could about his condition. 

Then when Jenny and her husband, James were in Houston participating in a MECP2 duplication syndrome conference that they got a call telling them to come home as quickly as possible as Blake’s condition had suddenly deteriorated. Once at Rachel House, Blake’s condition continued to worsen and the family made the difficult decision to turn off his life support.  

Jenny said: “We knew it was time. We all stood around waiting for him to take his last breath but amazingly it didn’t happen that night. Just like he always did, my baby kept on fighting and breathing. We all stayed with him, cuddling him, sitting with him and holding his hand until, 58 hours later, on 8 February 2020, he very peacefully and serenely slipped away. My boy has left his mark on the world and an incredible legacy and I am so, so proud I was his mummy.” 

In order to help families like Blake’s throughout the pandemic, CHAS launched the world’s first virtual children’s hospice while Rachel House in Kinross and Robin House in Balloch continued to provide end of life care. CHAS at Home has never been in greater demand and supported families who were having to self-isolate or stay at home.

Iain McAndrew, director of fundraising and communications at CHAS, said: “Over the last year, our supporters have stood by CHAS families giving them strength and showing love in what has been an incredibly tough time for all. It’s certainly not been an easy journey but without that support, and our amazing staff and volunteers, we simply could not have continued to evolve and adapt our services, helping those in greatest need. CHAS was a lifeline for so many. 

“Our summer campaign is continuing our ask from Christmas 2020 – that everyone who can, supports Scotland’s most vulnerable children and helps us keep the joy alive even in the face of death.”

 

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