Mikael Johannesson was the epitome of living life to the fullest – regardless of challenge or circumstance.
In his 26 years he crammed in more kindness, compassion, fun and smiles than most – and he did it while handling a rare, life-limiting condition.
Today, mum Lorraine, has shared her own poignant tribute to her son: a prolific fundraiser, a champion, and the boy with a ‘big smile but a bigger heart’.
“Actually, Mikael’s own attitude best sums up his life: ‘I want to do it, I can do it, I will do it!’ And he did!”
Rare diagnosis
Mikael was born in Ninewells hospital on February 16, 1995.
He spent his first month in the special care baby unit but after just five weeks at home was readmitted to the hospital.
“He fell into a coma and received a police escort to go to Yorkhill in Glasgow for dialysis.
“Mikael was then diagnosed with propionic acidemia and was given little chance of surviving bar that of being severely disabled.”
Propionic acidemia is an inherited condition in which the body is unable to process certain parts of proteins and fats properly. It can lead to an abnormal build up of particular acids.
In Mikael’s case he was fed normally for his first two months but his system was unable to break down the protein which caused the four-day coma, and a toxic ammonia build-up.
Beating the odds
But despite being only one of two children in the UK diagnosed with the condition, at the time, and with a poor prognosis hanging over their heads, Mikael did what he always did: he surprised everyone and beat the odds.
He was the first person that his then doctor, Professor Robert Hume, had ever seen survive through birth with that diagnosis.
However Lorraine, who brought Michael up near Montrose, was determined her son would go to school.
“Fast forward to five years old and Mikael attended Stracathro Primary School and then Brechin High, albeit not in the mainstream capacity.”
Dancing and dressage
Over the years Mikael and Lorraine attended ceilidhs together and his love of music just grew and grew.
While Scottish music was a firm favourite, he and his mum joined a Bollywood dance class which led to them performing together on stage at the Bonar Hall.
They were also instrumental in starting up a singing group called Positive Notes which this time led to a performance at the Dundee Rep.
He loved going to the theatre to watch musicals and every August would join his cousin Steve, busking at the Edinburgh festival.
Mikael won second prize at the Tayside dressage competition, “not to mention every cup available through Riding for the Disabled – some more than once!
“He went to every possible horse show in the country, befriending some of
the professional showjumpers along the way.
“And August was also the month he would be determined to walk up the steep hill to reach the water jump at Blair Castle horse trials – no mean feat!”
MS Therapy Centre
In 2006 after being diagnosed with optic nerve atrophy Mikael was registered blind.
Around this time he began attending the MS Therapy Centre in Dundee to
receive hyperbaric oxygen.
He made countless friends during his therapy sessions, while also improving his sight.
Swine Flu
In November 2009, Mikael was admitted to Ninewells with swine flu.
Another set back, he was in the hospital’s ICU unit for seven-and-a-half weeks.
“He had to spend a further five weeks in the hospital learning to walk again. But nothing stopped Mikael from living a full and happy life.”
In 2012, he enrolled at Gardyne College’s Next Steps course.
He won student of the month twice plus student of the year.
However, he also put his love of cycling to good use taking part in the fundraising triathlon for Sports Relief.
Helping others, always
Fundraising was a constant throughout Mikael’s life.
“He raised thousands and thousands of pounds for various charities over the years.
“These included Ninewells Paediatric Metabolic Research Fund, Riding
for the Disabled and the MS Therapy Centre.
“But last but not least, his final fundraising effort for the intensive care unit Endowment Fund, at Ninewells.”
Mikael’s funeral took place at Dun and Hillside Parish Church, Montrose, where he and his mum were members.
In the place where he loved to sing hymns, the young man with a passion for Songs of Praise was celebrated in a day mum described as unforgettable.
Those attending could donate to his final fundraiser tallying up more than £2000 so far.
Further donations can still be made by emailing Lorraine on l.johannesson@btinternet.com for details.
We were the perfect team
Mikael passed away following a short battle with pneumonia which led to sepsis, on January 13.
As she was, every day and hour of his life until that point, Lorraine was with her son.
Lorraine paid tribute to Mikael at his funeral. She wrote: “From a boy who made the biggest impression on our hearts to the man who made the world a little brighter.
“Just like the snowdrops which appear every year around his birthday, he fought against difficult growing conditions. But he still maintained his magical beauty of both looks and character.”
Asked how she will remember her son, Lorraine simply said: “We were the perfect team. And I’ll make sure all his lifetime achievements will never be forgotten.”
You can read the family’s announcement here.
