Worlingham family's holiday 'challenge' with son with allergies

BBC News

3 days ago

A family with a son who has a weak immune system and a catalogue of allergies has described how going on holiday involves "military-level planning" to reduce the risks."We are trying to work out how to do life safely, but not miss out on things as a family," said mum Heidi, from Worlingham in Suffolk.Her son Bobby, 5, is autistic and has an extremely rare condition – BCL11B-Related Disorder, caused by mutations in the BCL11B gene - that has left him with almost 40 allergies and a susceptibility to common illnesses.Heidi, 44, said they had decided to "take the plunge" and go on holiday to Jersey, but would struggle to travel further afield.
"At the moment, we've completely ruled out flying by plane."If we go to a different country, it's what foods we're able to buy, can we understand the ingredients? They're already complex, even in English," she said.A ferry journey to Jersey will be the family's first trip off the UK mainland.Her daughters Connie, 12, and Bettie, 10, said their friends were able to do things they could not.Connie said: "They can go abroad on holiday a lot more. "It's easier for them because they can take planes, however we can't because of Bobby's allergies and additional needs."
Heidi said another challenge was not knowing how foreign hospital services work, or whether medical staff would understand the complexity of Bobby's condition.Dad Stef, 44, said there were only 58 recorded cases of BCL11B-Related Disorder in the world and "doctors don't really know much about it yet – they're learning with us"."He has very, very low immunity. "We've been told to think about it like someone on cancer medication," said Stef."If he gets close to someone with chickenpox or measles, it could mean days in hospital. "We're on the look out all the time for anyone who's even got the sniffles.""There's always planning involved to make sure places are clean and safe for Bobby," he added."That usually means it's outside stuff, which is OK in the summer. "In the winter you're really restricted, and the poor girls miss out."
Bobby's allergy's include eggs, nuts, bananas, potatoes, cow's milk, tree and grass pollen, feathers, dogs, cats and rabbits.Dr John Chapman is a consultant paediatrician specialising in allergies at the James Paget Hospital in Norfolk – one of several places Bobby goes for treatment."I've never known a patient like this before," he said. "We think it's an incredibly rare condition, and he is a subset of that rare condition. He's in a minority and very specialised."Dr Chapman said they were able to treat Bobby's immune deficiency fairly easily through regular antibiotics, to protect him from infections."The other part is down to his parents working out what he's allergic to and what they can feed him."They tend to get a good balance of what he can eat, but then he'll catch a cold or something and it will throw it all off. It's a constant battle," he said.
Heidi said: "It's a been a massive grieving process because this is a life condition and it's very unpredictable."She appealed to the public to be aware of other people's conditions and allergies."Families like us really rely on the kindness of other people's decisions and choices to stay safe."We know allergies can make people feel their decisions are taken away because they aren't able to eat things in certain places, but that is a small sacrifice we hope they would make, so we can stay safe in that area," she said.An Allergy UK spokesperson said: "Embarking on a journey should be a thrilling experience but, for people with allergies, it can also bring extra challenges."Our website and Helpline offer detailed guidance on what to consider when traveling abroad with allergies."Our Allergy Translation Cards also empower travellers to communicate their dietary needs clearly and confidently."
Despite the challenges, Bobby's family are full of affection for him."He's so funny. He went from being non-verbal to verbal – he can tell jokes now," said Heidi."He's just a bundle of energy, non-stop, and very affectionate."
Follow Norfolk news on BBC Sounds, Facebook, Instagram and X.