A mother of a son with life-threatening food allergies, who said she battled to access appropriate medical care, is inviting others in similar situations to join a support group.
Judy Devorkin, from north London, told the JC: “I felt completely alone, and there was no support. I was thrown into this world of allergies and a lot of things that come with it: hospitalisation, respiratory issues.”
Her son Ari, two, was diagnosed at around ten months old with allergies to milk and raw egg. During testing, he suffered a severe reaction, developing wheezing and going into anaphylactic shock. He was treated with adrenaline, but the incident marked a turning point for the family.
“Our lives literally changed that day, when we realised how serious his allergy was,” said Judy.
The following morning, Ari’s condition hadn’t improved, and he was rushed to hospital by ambulance and needed a week of intravenous medication.
He is now under the care of a hospital allergy clinic, but Judy said she battled to access the appropriate medical care and find out about potential treatment options, such as immunotherapy.
While she wasn’t sure she had the energy to set up a support group, she “realised that if I don’t do it now, I won’t ever do it”.
Camp Simcha, a charity which supports families in the Jewish community who have a child with a serious illness, offered to team up.
Since then, over 40 parents have joined the group, where they are able to share expertise and join events. They have already hosted a talk by Dr Lee Noimark, a consultant in paediatric allergies, and Judy is hoping to expand the service to include advocacy and education.
“[In the group], you feel heard and validated, and you don’t feel isolated or that you’re inconveniencing people,” said Judy.
She said that anxieties about allergies were particularly acute around food-centric Jewish holidays, but that the group was a forum for parents to get clarity and support.
Judy said that having a severe allergy could be very isolating for a child. “We’ll go to a party and you have to be constantly on your guard and tell your child: ‘No, you can’t have that’”
Today, awareness of severe childhood allergies remains limited. Combined with the uphill struggle of getting a doctor’s appointment, the life of a parent with a severely allergic child could be strenuous, said Judy.
“I had to fight for an appointment to get his allergies checked. People are fighting for their children’s lives, essentially.
“People shouldn’t feel how I felt. Some might have private healthcare and take it – but others don’t, which was the position I was in. It’s a constant battle. I want people to have proper access [to medical care].”
She said that having a severe allergy could also be very isolating for a child. “We’ll go to a party and there’ll be lots of allergens. You have to be constantly on your guard and tell your child: ‘No, you can’t have that.’ You’ll be in a soft play area, or a family centre, and people are having dairy that your child is allergic to, so you have to ask them to clean it up or make sure their child doesn’t wipe it everywhere.”
Looking to the future, Judy said they were considering moving to Israel. “I’m looking forward to the healthcare there. I’m sorry to say it, but here I feel like [my son] is falling through the cracks.”
Having a child with a chronic illness can be very isolating, but being part of a group with others who understand and share their experience and knowledge can be life-changing
Setting up the allergy support group was also a way for Judy to honour the memory of her late father, Yosef Elimelech Ben Meir Nosson z”l. “He loved helping people - that was his motto. He would have loved this,” said Judy.
Joanne Woolich, Camp Simcha’s family liaison community manager, told the JC that Allergies@Camp Simcha was one of several support groups the charity runs.
Others are for parents of children with inflammatory bowel disease, Type 1 diabetes, eating disorders and epilepsy. There is also a support group for parents with babies born prematurely. “Parents really find these spaces are supportive and very valuable. They often tell me the difference it makes to feel understood and heard,” said Joanne.
"Having a child with a chronic illness can be very isolating, but being part of a group with others who understand and share their experience and knowledge can be life-changing.”
An NHS spokesperson said: “A range of safe and effective treatments, including newly approved immunotherapy drugs, are available on the NHS to help people manage common allergens such as certain tree pollens and house dust mites. We are also developing guidance to support local services to improve allergy care and reduce any inequalities in access.”
To find out more about the Allergies@CampSimcha group, please email: joanne@campsimcha.org.uk
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