No family should face
the fight alone

Every cough or cold is a threat for Sebastian, as his heart cannot cope with viruses that most children recover from easily. These often result in emergency hospital admissions – Chanie says that some months, Sebastian can spend two out of every four weeks in hospital.

Even when Sebastian is stable, daily life is far from easy. He is unable to have any food orally and must be tube-fed seven to ten times a day. This often makes him sick, meaning Chanie rarely gets more than a couple of hours’ sleep between feeds.

A second surgery last November aimed to repair some of the holes in Sebastian’s heart, in the hope of delaying the need for a transplant until his early teens. However, things didn’t go to plan. Sebastian went into cardiac arrest and had to be placed on life support. After four months in hospital, the surgery was reversed and he was finally able to return home.

“Camp Simcha came into our lives when we got home from hospital after Sebastian’s first surgery,” says Chanie. “I was exhausted, tube feeding every three hours, with a toddler who also needed me. I didn’t know which way to turn.

“My Camp Simcha family liaison officer Talia immediately put help in place – a night nurse so I could get some rest and hospital transport. We had four or five hospital appointments each week, and some days I felt like I was falling asleep at the wheel.”

If Sebastian is admitted to hospital, Chanie’s 70-year-old mother looks after Sidney, so the crisis meals and volunteer support provided by Camp Simcha are a vital lifeline during those times.

“When Sebastian had his last surgery, Talia sat with me at the hospital. That meant so much,” says Chanie. “Throughout those terrible months when he was on life support, Talia and Camp Simcha were there for anything and everything we needed. They even sent volunteers to sit with Sebastian so I could spend some time with Sidney. My biggest worry is always that she is falling through the cracks.”

Sidney really misses her mum during long hospital stays and medical appointments – and Chanie knows she finds it hard.

“At Camp Simcha’s residential retreats and family outings, I get the chance to enjoy proper time with Sidney. With all food and activities organised, and a carer or volunteer to support Sebastian, I have the time and energy for precious mum-and-daughter moments. The whole retreat is amazing and fun for all of us, not to mention respite for me – but the best part is being able to give Sidney all my attention.”

When they are at home, Camp Simcha provides a carer to give Chanie more opportunities spend more time with Sidney – and Sidney also has Big Sister volunteer who comes to the house to play and run around with her. Chanie says that knowing someone can be there for her daughter when she needs to focus on Sebastian is a huge comfort.