The family of a baby boy who passed away aged 142 days old in 2017 have raised a staggering £25,000 for extra help in neonatal intensive care units.
Marcel and Ruth Berenblut’s son Daniel Ephraim – aka Donnie – was born in April 2017 with Edwards Syndrome, a genetic disorder. Weighing 1.7kg (3 lb 3 oz), he was not expected to survive more than a few days.
In his first few weeks, Donnie’s lung collapsed, he developed an infection, and doctors worried about the weakness of his heart. Following discussion between the hospital team and Rabbi Dr Akiva Tatz, surgery was ruled out. Around the same time Donnie’s older brother Matty had his bar mitzvah.
As Donnie approached four weeks of age, Marcel and Ruth told friends and family that he had already lived longer than doctors expected, saying: “Several times we have braced ourselves only to be delighted to hold him another day.”
Aged 50 days, with the help of two nurses and a trail of medical equipment, including his ever-present feeding tube and oxygen supply, Donnie made it out of his ward “as far as a view of blue skies, trees and red buses”.
Aged eight weeks, he went outside for the first time, for a family picnic in the park. “This is about him feeling the sun on his face and the wind in his hair,” his parents wrote. “And about us enjoying his life with him and creating memories.”
Doctors representing surgery, anaesthesia, cardiology, radiology, paediatric intensive care, neonatal intensive care and palliative care agreed no intervention would realistically make Donnie’s life longer or better, and the little boy passed away in September, but not before seeing Trafalgar Square, Regent’s Park, Hyde Park and London Zoo with his family, including brothers Rafi and Ami, and sister Yael.
In an incredibly moving journal entry written during Donnie’s final days, now posted online, Ruth says: “I have always believed I could deal with anything which came my way. Not because I am strong but because I am pragmatic. And for 136 days that was more or less true. So I was right and I was the right mother for Donnie.
“But that time is over and this week Donnie has needed me to be immersed in the present – to be still and to hold him close. I have done that for many hours day and night.
“My challenge is to be kind, to stroke him and talk to him when I am tired and numb and weakened by watching his decline even though I know that he is unaware of it, and not to be hard on myself if I can’t.”
Donnie’s final night was spent being cuddled by his parents, listening to music. “In the past, Donnie had enjoyed Van Morrison, Leonard Cohen, calming whale song type music and Chopin,” Ruth said.
“On this night, it was slow Jewish music with a song referencing part of his Jewish name. At one point, Marcel stroked his head – a small pleasure Donnie had always loved. Even in his semi-conscious state, it was apparent that he felt it, and his little body visibly relaxed.”
The family set up Donnie’s Fund shortly after his death, and paid tribute to the staff at University College Hospital, where their son spent most of his life, saying: “With the support of the unit, Donnie wasn’t just kept alive but lived.”
Late last month, the tiny charity held its first ever event, selling out the 400-seat artsdepot theatre in Finchley with six comedians, all with TV credits, and raising more than £20,000 “in memory of our little boy”.
Marcel said: “This was massive for us. It will now become an annual fixture. The money raised through the generosity of our supporters will help support families at a deeply stressful time emotionally, financially and logistically.”
He added: “The event was a way to remember Donnie surrounded by people and see good come from his life. We are very grateful to everyone who supported the event both inside and outside the room.”
For those wishing to support the charity, go to: www.donniesfund.org