A singer whose son who had a rare genetic condition sang to him which "brought him back to life" for almost a year without breathing apparatus. Jennifer Osborn has sung at festivals internationally to thousands of people but she said singing The Greatest Showman’s Million Dreams to her dying son was the hardest thing she ever had to do.
The 36-year-old mum from Dagenham, Essex sang the song from the popular 2017 musical movie in a quiet room to her nine-year-old son Jake in October 2021. He was suffering was respiratory failure at the time however made an astonishing recovery living for a further 11 months without apparatus, reports Essex Live.
The "brave and courageous" little boy had a rare genetic condition called TBCK syndrome, which his three-year-old brother Jimmy also has. TBCK Syndrome is a rare neurogenetic disorder which impacts brain development and intellectual functions.
The autosomal recessive disease is caused by a genetic mutation usually carried by both parents and there are only around 100 reported cases worldwide, according to the TBCK Foundation. Jake spent around 8.5 months in and out of hospital last year and was put on a ventilator several times, including the respiratory arrest in October where his condition deteriorated to a point doctors told the family there was nothing they could do.
Mrs Osborn said: "I looked at the nurse and I said to her what do I do because I was so frightened to be there. 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."
TBCK syndrome meant Jake experienced a range of developmental, muscle and respiratory issues like flopping and seizures when he was a baby. Because of the condition, he was non-verbal, suffering a lot of seizures, unable to regulate his breathing, and needed 24-hour nurse care in the family home.
Jennifer said he loved music however and could recognise certain songs as well as being "the happiest little boy in the whole world", laughing and smiling till the end.
She said: "I cried a lot when he was really poorly and he'd just laugh. 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."
Mrs Osborn revealed that Jake appeared to almost defy every odd because he did not need an 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. So for 11 months, he lived how he wanted to live and I don’t know how he did it."
After he recovered from another respiratory arrest in July, things sadly took a turn for the worse in September as he lost a lot of weight, dropping from 24kg to 17kg, and had to be placed on a temporary gut rest as his stomach dangerously stopped absorbing nutrients. Jennifer reported that a nurse who looked after Jake for the day was left in tears following his shift.
She said: "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.
"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 the always optimistic mother went to his room on the night before he died. Talking about her singing, Jennifer said: "Something just switched inside my gut and I just knew, whether it is as a mum, he was going to pass away. 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'.
"I heard it said that sometimes they can have people hold on until you kind of give them the ok for them to actually pass."
Jennifer and her husband James had huge fears about Jake passing away at home at the time and moved their son to Haven House Children Hospice, Woodford Green, where he was put under palliative care coming up to his ninth birthday. He died on September 14, 2022 with his mum and nurse at his side, with Jennifer watching him take his last breath.
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. Speaking just weeks later Jennifer said: "I kind of feel guilty for living at the moment and as much as it sounds morbid and dark I think it's not natural that I should bury my son. It is so painful, the pain is like no other pain I have ever felt."
The family would like to have a memorial bench at the cemetery to commemorate Jake’s life as well as raise money and awareness about the rare genetic disease.
Jennifer says she can feel Jake’s presence around her as white feathers have “tumbled down in slow motion from the sky” or found on several occasions, which she kept from the different encounters. She said the feathers could be connected to a TacPac, a sensory tool to develop communication skills, Jake used which had feathers in them.
Mrs Osborn said: "I fully believe Jake is letting us know that he is fine and everybody got their own beliefs but I took great comfort from that he is not suffering. I kind of believe that he is in paradise."
The family set up a GoFundMe page towards the funeral and set a target of £1,000 but the page currently has raised over £4,000. The funeral was beautiful, according to Jen and she was blown away by the amount of online support.
For more details on TBCK syndrome, click here.
