Cove eight-year-old Morgan Beeby spent his short life defying the odds and battling gruelling health challenges to become known as the family superhero.
Now, following his Spider-Man-themed funeral, his parents pay tribute to their “fiercely determined cheeky monkey” who always had a glint in his eye.
Complications
Born on April 25 2015 Morgan was a much-longed for child for Pauline Alexander and Neil Beeby. After a “textbook pregnancy” that “turned at the last minute”, Morgan arrived by emergency C-section.
Weighing in at 7.5lbs he was immediately taken to intensive care but started having seizures the following day. At just eight days old tiny Morgan was given an MRI scan. His doctors sent the results all over Scotland before giving the family the devastating news their baby had bilateral polymicrogyria.
A rare condition characterized by abnormal brain development before birth, symptoms include recurrent seizures. However, delayed development, problems with speech and swallowing, and muscle spasms are also part and parcel.
This would be particularly true for Morgan who had to live with excruciating dystonia.
Devastating prognosis
Pauline and Neil were told he may only live until his teenage years.
“We were shocked. One minute we were planning a wedding and getting ready to welcome our healthy baby. The next everything became about caring for Morgan,” said Neil. “Pauline dedicated herself to him.”
In one day Morgan had 135 seizures. Medics persevered to find the right levels of medications to help the baby boy.
“From the second he was diagnosed my mind was made up. Morgan would have the best and most full life possible. Everything they suggested could help him, we did it. But for the first two years of his life he was in hospital more than the house.”
Mum and dad were told to prepare for him only reaching the age of two.
Special boy
When he was at his Langdykes Avenue home, car sales executive Neil and accountant Pauline would split shifts at Arnold Clark to provide 24-hour care.
They were later told alongside Morgan being the only person in Aberdeen with his condition, he may be the only person in the world to have bilateral polymicrogyria AND the gene SCN2A.
“We’ve always known he was special… that out it just confirmed it,” Pauline said.
‘Our little Martian’
Between the ages of two and five the correct balance of Morgan’s medications were in place and “he really came into his own.” Hopes of him reaching his teens were reignited when he continued to amaze doctors with his progress.
Though unable to speak he developed his own way of communicating that mum and dad affectionately call “Martian” – because to them Morgan was “out of this world.”
He attended Orchard Brae school where he thrived in nursery for two years “melting hearts” and “having everyone in stitches”. He once again smashed all expectations when he began eating solids – something many children with his condition are unable to do.
But in January 2022 he suddenly went off his food.
Emergency care
“He loved his food,” said Pauline. “He was a proper boy with a huge appetite. I would spend a whole day cooking from scratch. It was all worth it when I could see how desperate he was for more.
“Morgan had so much to contend with. So much pain. Seeing him enjoy food was such a joy. That’s why it was unusual when he turned his nose up at it.”
Further tests revealed he was in “gut failure”.
This worsened in June 2022 when Morgan aspirated some food and had to be flown to Edinburgh where he was put on a ventilator.
“It was horrendous,” said Pauline. “He was in intensive care for three days then more than two weeks in another ward. Then back to the ARI for another three-and-a-half weeks. I think If I’m honest it was then I thought we maybe wouldn’t have him until he was a teen.”
“Although he did always have a habit of bouncing back,” said Neil.
Facing reality
As the year progressed, more hospital visits took place and he stopped taking any food orally.
As gut failure worsened Morgan suffered relentless vomiting and retching.
Watching him endure daily pain, Pauline realised this may be one “superhero battle” he wouldn’t win.
“I took redundancy in the pandemic so I saw Morgan most of the time. I just knew… though didn’t want to believe it… that we may lose him. Neil took longer to come to terms with it.”
“During the times I was with him I wouldn’t always distress. I couldn’t allow myself to believe he was deteriorating. Then one day I gave him the tiniest amount of medicine and he became really ill. It was awful to see him like that. That’s when realisation hit,” Neil added.
All they could do was hold him as he suffered.
No more suffering
Supported by CHAS nurses Morgan was able to remain at home, surrounded by his favourite things, and avoid further hospitalisation.
He passed away peacefully on October 5 during bath time.
“It was his favourite time of the day. He always had a habit of holding his breath so for a few seconds I thought maybe he was doing that. Then I realised. I called for Neil.”
“I came in and held his hand as he exhaled for the last time,” Neil explained. “He was finally free of suffering.”
Resting at home
Not ready to let him go, the family chose to keep Morgan at home for the 13 days between his death and the funeral.
“We didn’t know you could even do that but the CHAS nurses explained that children can stay at home with the aid of a cold blanket.
“We knew not everyone would understand it but it really helped us prepare for saying final goodbyes,” said Pauline. “During that time I bathed him and cut his hair. We got him ready for the celebration of his life. I slept on the pull-out bed next to him.”
Colourful farewell
Superhero-mad Morgan was dressed in his Spider-Man onesie for his Spidey-themed life celebration which took place in their garden.
“He had a Spider-Man coffin, the hearse was decorated too. The Berriedale funeral director’s son also dressed as Spider-Man and led the cortege,” said Neil.
For the final leg of his journey from Hazlehead Park to the nearby cemetery Morgan was taken by horse and carriage. He was buried with his favourite toys and illuminated fairy lights so he wasn’t “alone in the dark”.
“It was windy, but perfect,” said Pauline.
Neil amended and read Stop All the Clocks by WH Auden to reflect Morgan’s cheeky personality.
“I went to the grave yesterday to read to him and play some of his favourite country music,” Neil said. “Me and Morgan’s mum aren’t together so when I go home it hits me again and again that our perfect boy is gone.”
Our greatest privilege
Speaking from the adapted room where Morgan spent most of his time both parents agreed that raising Morgan was a privilege they wouldn’t trade.
“Would I have loved him to suffer less? Of course. But would I swap the boy we had? Never,” Pauline said.
“It was an absolute honour to be Morgan’s parents. He was resilient, cheeky, determined and brilliant. I can’t believe he’s not here,” added Neil. “And I can’t imagine him any other way. I’d be scared to even wish a different outcome because that would mean a different child.
“The one we had was perfect.”
Pauline and Neil are now raising money in Morgan’s honour for his school, CHAS and Aberdeen Children’s Hospital.
They also plan to document his final days resting at home to support other families faced with making such a choice.
- If you care for someone with polymicrogyria and want to speak with Morgan’s family email lindsay.bruce@ajl.co.uk.
