A north London couple have made it their mission to raise funds for Camp Simcha’s Special Care Baby Project, in memory of one of their twin sons who died five weeks after his birth.

The fund, ‘Avidan’s Mission’, is named in memory of Avidan Freilich – who along with his twin brother Nathaniel, was born last September, at 28 weeks, to his mother Gabriella and singer father Eitan – who used to be a Camp Simcha volunteer Big Brother.

While both boys were initially doing well despite their early arrival, Avidan passed away tragically and unexpectedly in November. This week Eitan released a song he has produced and performed ‘Lo Iyrah’ (Avidan’s Song) – beginning plans to fulfil what he and Gabriella see as Avidan’s purpose in life.

“Our experience showed us how much more can be done to assist families in our circumstances, and this is what we want to do via Camp Simcha’s Special Care Baby Project,” says Eitan, from Hendon. “As a former volunteer I know the difference that Camp Simcha makes to families when they have a sick child. We were lucky enough to have supportive family and friends, but there are things that unless you’ve experienced it, just aren’t thought about: incubator covers, premature nappies, premature bottles, milk delivery, premature clothes, the ‘preemie octopus’ – a long list of items we were rushed to get.

“In addition, the transport cost us £800 a week, due to Gabriella’s slow recovery and the lack of parking at UCH, where the boys were. That can put huge strain on families financially, in addition to the emotional strain.”

Gabriella adds: “At one point, Avidan was rushed to Great Ormond Street Hospital and we were travelling between two hospitals.

“The neonatal experience is often compared to a rollercoaster, a metaphor we can very much confirm. One day the baby might be moved up to special care, the next they can be back in intensive care. At times we wanted to be left alone, at times we wanted support. Our aim for Avidan’s Mission – via Camp Simcha – is to fill that gap between what the NHS can provide and what families in our situation may need, offering a one stop shop to all parents experiencing difficult births and sick babies.

Camp Simcha’s Special Care Baby Service already works to fill that gap – offering hospital transport and parking; 24/7 Family Liaison Officer; expert therapeutic support; crisis food or cleaning support; Support for siblings from Camp Simcha Big Brother and Sister volunteers; Emergency hospital bag with items specific to premature babies and many other practical and emotional support services. The Freilich’s hope is that Avidan’s Mission will ensure this service grows in reach and also provision.

Following 110 days in hospital Avidan’s brother, Nathaniel, is now home. “He is a happy, healthy little child ready to bring his goodness to the world,” says Eitan. “This week he was at last strong enough to have his brit milah. On that same day we launched Avidan’s Song ‘Lo Iyrah’, and his mission with it. We have already raised £4,000 in less than a week.

Camp Simcha chief executive Neville Goldschneider said: “Eitan and Gabriella have experienced first-hand how vital this kind of service can be to families with a baby in special care. We are so grateful to them for their strength and bravery, turning such a difficult and painful experience into a positive to help others.”

Camp Simcha volunteer fundraises in son’s memory