“We know that some of the fathers do not find it easy to share their emotions around their child’s illness.
“We want dads to know they are not alone and that it’s okay — in fact, important — to take a break and focus on themselves. In the midst of so much uncertainty, it’s also a reminder that they are part of a wider community of support within Camp Simcha.”
For Camp Simcha father of three James, the network has provided him with a group “that really understands” what it is like to look after a child who has a serious condition.
James, who lives in Barnet, north London, told the JC: “The reality is that most people don’t understand what we face as a family, and women are more open about things and talk about the things that are difficult more.”
Camp Simcha's dads' network event in Manchester: Lee Fernandez and Camp Simcha's Benji Garfield (r) (Photo: Camp Simcha)[Missing Credit]
His son, Malachi, four, has Ehlers-Danlos syndrome (EDS), which is a group of genetic disorders that affect the connective tissues.
He is in and out of hospital and uses a special mobility buggy as he is easily exhausted.
James explained: “His condition causes him problems with swallowing which means he has difficulty with eating. He aspirates, where his lungs fill up. He is not an easy child to look after.”
Because James works full time and it is often his wife who does the lion’s share of childcare, he sometimes feels guilty for “complaining” or talking about how he feels.
“I feel like, how can I complain, especially to her? I can’t. I go to work, I come home and I help, but she does most of it. She is brilliant,” he said.
“The network is great because it gives us people to talk to who get it. We talk about how we are coping and dealing with the pressure.”
So far, Camp Simcha has organised a go-karting evening in Manchester and crazy golf in Watford, London.
Father Lee Fernandez with his son Otto, who has Alagille Syndrome (Photo: Lee Fernandez)[Missing Credit]
Camp Simcha father Lee Fernandez, whose son Otto, two, has Alagille Syndrome, which causes liver disease and affects his heart, joined the go-karting get-together.
The dad of three from Prestwich, Manchester, said it was great to be able to meet up with other fathers who understood.
Speaking to the JC, he said: "It was a fabulous evening, connecting with other dads from different parts of the community, who have similar concerns and challenges. Not to mention the racing, enjoying some fun and food together.”
Otto’s condition means his skin is always itchy and he can’t help but scratch.
Lee Fernandez with his son Otto, who has Alagille syndrome at a Camp Simcha event (Photo: Lee Fernandez))[Missing Credit]
“It is difficult for us to watch. His thighs are red raw, and it is hard to explain to him as he is only two.”
The family have just found out that Otto’s heart condition has deteriorated and he might need a stent in the future.
“It is worrying, and it is not something I'd normally go around announcing, so having a group of dads to talk to and get support from is a really good idea," Lee said. “Not having to explain all the visits we have to go to; it is just the little things.”
Lee Fernandez and his son Otto, who has Alagille syndrome (Photo: Lee Fernandez)[Missing Credit]
He said: “The mums are normally great at getting to know each other. They come back and say: ‘I've just set up a WhatsApp group with four other mums and we are meeting next week’, whereas we dads just don’t do that. But we also need it. We just need encouragement.”
campsimcha.org.uk
