The story of Carnoustie youngster Blake McMillan – who fought bravely against a rare illness before his death aged seven – is helping to front a national charity campaign.
Blake died in February 2020 after a lifelong battle with MECP2 duplication syndrome.
The rare genetic condition meant he was unable to walk, talk, sit, crawl or feed himself.
Now his story is being told as part of a campaign launched by Children’s Hospices Across Scotland, or CHAS.
Its summer fundraising appeal is urging Scots to support families by ensuring no one faces the death of their child alone.
Blake’s mum Jenny said: “My boy has left his mark on the world and an incredible legacy – and I am so, so proud I was his mummy.”
‘We were always made to feel so welcome’
Jenny has highlighted the support her family received from CHAS.
She added: “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 in Kinross 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.”
Rachel House played a crucial role in June 2019 when Jenny married her partner James.
She 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 also helped to strap the youngster to his mum using a special harness, so they could dance together.
As Jenny cradled her son in her arms to Ellie Goulding’s 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.
Jenny and James were in Houston for a MECP2 duplication syndrome conference when they got a call to say Blake’s condition had deterioriated.
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 February 8, he very peacefully and serenely slipped away.”
A tough year for families
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.”
Mum’s tribute as ‘little fighter’ Blake loses battle with rare genetic condition