The mum of a three-year-old boy who can have up to 40 seizures a day today said as “long as he is willing to fight, I will fight with him”.
Jayden Easdale was diagnosed with rare genetic condition Tay-Sachs disease when he was 15 months old after visiting a neurologist at Aberdeen Royal Infirmary in 2017.
It is thought that Jayden could be the only person in Scotland with the condition.
His mum Lynn Easdale said she and husband Brian, 50, felt like the “world had been pulled out from under them” on receiving their son’s prognosis that he may not live beyond four-and-a-half years old.
The 38-year-old, whose son needs 24-hour care, said: “I always remember that day, it was like a helium balloon which somebody had taken the plug out of.
“It took a while to accept it. I had never heard of Tay-Sachs disease.
“Jayden is the only person in Scotland with it. It’s a rare genetic disease and both parents have to be carriers.
“I hope to raise awareness that there are these rare diseases out there.”
Jayden, who is registered blind and is also epileptic, suffers at his worst up to 40 seizures a day, but this has been reduced to under 10 a day.
The three-year-old is also prone to chest infections and has to be specially fed through a button feed in his stomach.
Lynn, who is from Fraserburgh, said her son’s health has been “up and down” with several weeks spent at Royal Aberdeen Children’s Hospital for treatment.
She said: “We have been fighting to try and keep him at home more. He’s a lot happier at home. He’s now on a new prophylactic antibiotic and so far, touch wood, he has had quite a good month. We’re hoping that he stays on the up.”
Tay-Sachs disease is a rare inherited condition that mainly affects babies and young children. It stops the nerves working properly and is usually fatal.
The symptoms of the disease usually start when a child is three to six months old, and can include being very slow to reach milestones like learning to crawl, along with difficulty swallowing, loss of vision or hearing, muscle stiffness and seizures.
Lynn, who is also mum to daughter Kaitlin, 19, and son Connor, 6, said Jayden is such a “lovable little boy” who has touched the hearts of many.
Keep up to date with the latest news with The Evening Express newsletter
She added: “Jayden is quite conscious when you talk to him he can smile and he can hold certain things in his hands.
“We have never lain down to his diagnosis. He’s a special little boy.
“The amount of people who have had their hearts opened by Jayden, it’s crazy. Every day we have him is a special time.
“You can see on his face that he’s a fighter.
“I’ve always said with Jayden as long as he’s willing to fight, I will fight with him.
“If he’s not been having too good a day and then he smiles it takes the darkness away from the disease.
“The more days he is here, the more special it is each day.”