The family of Charlie House inspiration Louis Johnstone, have paid tribute to their “courageous boy”, who died yesterday age 15.
Second son of Tracy and Craig Johnstone of Kingswells, Louis – known for his big heart and even bigger smile – was born prematurely in 2008.
He was later diagnosed with multiple complex and painful health conditions.
Louis’ lasting legacy
After months of being in and out of hospital following Louis’ birth – and experiencing a desperate shortage of appropriate support and information in this part of the country – Tracy and Craig wanted to do something to help their son and other families in a similar position.
Their drive to help children and young people with life-limiting conditions has led to scores of north-east families finding support through Charlie House.
And it all began with Louis.
A legacy they have vowed to continue.
“We are totally broken hearted to lose our gorgeous, smiling, courageous boy,” they said. “He’s battled through 15 years and has been the total inspiration for Charlie House. That will be his lasting legacy and we will do everything we can to deliver that in his memory.”
Wee smiler
Louis, whose twin sister Eva passed away a day after their birth, was later diagnosed with severe quadriplegic cerebral palsy, severe dystonia, chronic lung disease and spina bifida occulta.
Wheelchair bound and requiring 24 hour care, Louis loved spending time with his older brother Ellis, joining in group activities, and playing games on his eye gaze computer.
But more than all of that – and despite a life of challenging health – Louis loved to smile. A trait evident throughout his short life.
Quest for help
As a baby he spent most of his first year in hospital enduring multiple life-saving operations and procedures. Amid the loss of their daughter and caring for their older son the Johnstones were confronted with a heart-breaking reality. Battler Louis’s life would be limited and he may not live until adulthood.
In desperate need of help the couple were repeatedly told Louis’ needs were too complex. Forced to keep going despite no assistance being available locally, they made regular 100-mile trips to the nearest support facility.
Unable to accept this level of support on their doorstep, Tracy brought together other families in the same position.
At that point, the dream of creating a specialist support centre for children with life-limiting or life threatening conditions and their families was born. The hope was to give families in the north-east the crucial local support they needed.
Charlie House
Founded in 2011, and continually inspired by smiler Louis, since April 2017 Charlie House has provided support for more than 120 children with life-limiting conditions and their families. The organisation now runs 23 parent carer clubs, 11 siblings clubs, 25 family activity sessions and 10 holiday club sessions.
Named after the playful pup in the charity badge, the well known logo was drawn by Louis’ big brother Ellis, when he was just seven.
And the charity remains close to the family’s heart with Tracy now the chair of Charlie House board of trustees.
Sad news
A spokesperson for Charlie House confirmed the news of Louis’ passing. They explained his condition – which had increasingly become worse on entering his teenager years – further deteriorated over recent days.
“Over the weekend, Louis’ health deteriorated and the Johnstone family decided the best place for him to receive the best care and respite would be Rachel House hospice in Kinross, Dunbartonshire.”
Surrounded by his family Louis passed peacefully on November 28.
