A family whose baby son lived for just 142 days is raising money to support other families with a baby in neo-natal care.

Donnie, the fifth child of Ruth and Marcel Berenblut, had Edwards’ syndrome, also known as trisomy 18, a rare, serious genetic condition which causes a wide range of severe medical problems.

He spent his life in the neo-natal unit at University College London Hospital where the care was “fantastic”, said Mrs Berenblut.

Staff made it possible for her to take Donnie out of hospital to visit their home and go on trips to parks, London Zoo and Bedfordshire.

“We knew he would only live for a short time,” said Mrs Berenblut. “We wanted him to live as part of the family for as long as possible.”

It was especially important to the Berenbluts that Donnie spent time with his siblings Yael, Matty, Rafi and Ami.

“It was difficult for the children, juggling school and home and hospital. We were lucky that Donnie’s life was during the summer, so that these outings and visits were possible.”

At first, staff members had to accompany her whenever she left the hospital with Donnie. Later on, she was helped and supported to take him out alone.

“It’s hard when you can only go out for one hour in a week, and the rest of the time you are sitting by a cot waiting for your baby to die.”

The Berenbluts have set up a charity, Donnie’s Fund, to raise money to promote further dialogue on medical ethics, and to support families in a similar position.

They are talking to UCLH staff about how the money raised might be used to help people, “for example with staff and equipment to make outings possible for very sick babies”.

They are aiming to raise £180 for every day he lived, a total of £25,560.

“We’ve got lots of ideas. There’s certainly no shortage of things that one can spend money on to make life easier for families with babies in neo-natal units,” said Mrs Berenblut.

During Donnie’s life, the charity Remember My Baby sent a professional photographer to UCLH to take pictures of Donnie with his parents and siblings. The charity was set up to provide the parents of stillborn and ill babies with pictures to remember them by.

Donnie’s story is told on a website, www.donniesfund.org, which has details of how people can donate. These is also a MyDonate page here.

“It means a lot to know that Donnie’s life has a meaning and one of those meanings is of course making life easier for other families through Donnie’s Fund,” added Mrs Berenblut.