A devoted mum described the emotional moment she 'brought her son back to life' by singing to him.
Professional musician Jennifer Osborn has sung at festivals to thousands of people across the world but said singing to her dying son was the hardest thing she ever had to do.
Nurses were baffled when nine-year-old Jake appeared to perk up as she hummed The Greatest Showman's Million Dreams to him.
The youngster was receiving palliative care at a children's hospice while battling TBCK syndrome, a rare genetic condition which affects brain development.
“I looked at the nurse and I said to her 'what do I do?' because I was so frightened to be there," Jennifer told Essex Live.
"I was really scared to be there even, and I was so ashamed that I was crying. They took the BiPap machine off him and she said just maybe sing to him.
“He took this deep big breath and it actually kind of brought him back. The doctor came back in and she just put her stethoscope on his chest and could not believe it.
"Everyone sort of said it was your singing that brought him back and made him actually carry on to be able to keep fighting.
"So it was really lovely and we got to have him for another 11 months with him which was really really nice.”
Jennifer and her husband James had moved their son to Haven House Children's Hospice in Woodford Green as they had huge fears about him passing away at home.
The mum-of-six said her three-year-old son Jimmy also suffers from the condition which is caused by a genetic mutation usually carried by both parents.
According to the TBCK Foundation, it is extremely rare with only around 100 reported cases worldwide.
Last year, Jake spent around eight months in and out of hospital and was put on a ventilator several times.
This included one episode in October when he went into respiratory arrest, his condition deteriorated to a point doctors told the family there was nothing they could do.
But Jennifer told how Jake appeared to almost defy every odd when he was 'brought back to life' by her singing, and did not even need any apparatus to help him breathe for the last 11 months of his life.
“Looking back it was like such a miracle because of that he literally had 11 months of just being a child again without having masks on his face or breathing tubes," she said.
"So for 11 months, he lived how he wanted to live and I don’t know how he did it.”
Jake sadly died on September 14 and Jennifer revealed the life-saving song was the first song that was played at the funeral, which she said it meant the world to her and more.
He was diagnosed with TBCK syndrome in 2020 and experienced a range of developmental, muscle and respiratory issues like flopping and seizures when he was a baby.
Due to his condition, Jake was non-verbal, suffered lots of seizures, was unable to regulate his breathing, and needed 24-hour care from nurses in the family home.
However, Jennifer said he loved music and could recognise certain songs as well as being “the happiest little boy in the whole world”, laughing and smiling till the end.
“I cried a lot when he was really poorly and he just laugh," she said.
"He would just start laughing and he would always snap me out of crying and then I would start laughing with him.
“He had the ability to turn tears into laughter, which I thought was really amazing."
Jennifer recalled how things took a turn for the worse in September when Jake lost more than a stone in weight and had to be placed on temporary gut rest as his stomach dangerously stopped absorbing nutrients.
The mum said that one of the nurses who looked after Jake on that day was left in tears following his shift.
“It was absolutely soul destroying. The nurses didn’t even want to eat their lunch in front of Jake because he adored his food so much and he would look at them with his eyes wide open," she said.
"A nurse said he went over to Jake to do his medication and he just looked at him and cried, trying to get hold of the syringe because he just wanted food, it was so hard.”
Jake's condition continued to deteriorate and Jennifer went to his room the night before his death.
“Something just switched inside my gut and I just knew, whether it is as a mum, he was going to pass away," she said.
"I went in and said everything I wanted to say to him, gave him a kiss and said to him ‘just rest now, if you want to rest then rest.'
The family set up a GoFundMe page with the aim of raising £1,000 towards Jake's funeral, but the page raised more than £4,000.
They would now like to have a memorial bench at the cemetery to commemorate Jake’s life, and raise more awareness about the genetic disease.
