A Northern Ireland mum says she has to prepare herself every day for the possibility that her son will have a life-threatening allergic reaction.
Gemma Neill’s son Robin was only 18 months old when he had a reaction to cashew butter which left him screaming and covered in hives. She says that day changed her family’s life. Now Gemma, from Co Antrim, carries Epipens everywhere she goes for Robin and his tree nut allergy means they have to avoid all traces of nuts.
She said: “Shopping and cooking became, and still is, a military operation. I check food labels at least three times just to make sure, we've often had to get something out of the bin just to reassure ourselves I've always wanted to make sure that he doesn't miss out while above all else keeping him safe. It's not always easy.
“While he was young I was able to always be there, ready with the medication but he went to go to pre-school and then school. I can't describe the feeling of having to leave your child with strangers essentially and relying on them to save your child's life if needed. Let's not sugar coat it, allergies are life-threatening, I prepare myself every day for what I will do if anaphylaxis occurs.”
Thankfully Gemma says Robin's school, Ballymoney Model Integrated Primary, has been very supportive but unfortunately for many families this isn't the case: "Robin is currently six years old and in P2. His school is great and is also marking Allergy Awareness Week with activities in all year groups.
"A special mention to Mrs Knight who does a fantastic job managing the medical needs of pupils in the school. Unfortunately at Food Allergy NI we hear of too many instances where this isn't the case in schools."
Robin is one of around 50,000 people in Northern Ireland living with a life-threatening allergy – it’s estimated that two children in every classroom have food allergies, but no precise regional data exists.
Gemma has now joined forces with other individuals affected to form Food Allergy NI, a community non-profit group, which aims to support people with food allergies and to campaign for improved services.
She says one of the group’s key goals is to improve guidance and support for schools and teachers: "We want to share good practice and highlight the great work that some schools are doing in the hope to encourage more to follow.
"The launch event allows us to gather in a safe place without the constant worry of the children coming into contact with their allergies. It's also our launch event so we are looking forward to it!"
Vice-Chair Niamh Kennedy added: "We know from research completed by the Benedict Blythe foundation and from our own experiences that many school staff feel unprepared to manage serious food allergies. This can lead to dangerous situations and can exclude children from being fully involved in school life.”
The group has already begun to raise these issues with local politicians and have met with the Department of Education to address school preparedness.
To mark the first Allergy Awareness Week since it formed, Food Allergy NI is hosting a family fun day at Jones JR Sports Lab in Portadown on April 26. It’s a cause close to the owners of Jones JR Sports own heart – their family is managing allergies too.
Social events can be daunting for people dealing with food allergies filled with worry, risk assessment and feelings of exclusion.
Niamh said: “We wanted to create an event to celebrate together, where people can relax, connect and have fun in a space that understands and accommodates their needs.”
The Fun Day event will feature games, entertainment, and safe snacks all in an allergy friendly environment. It will also be an opportunity for families to connect with others in the community.
For more information on the Fun Day and Food Allergy N.I., please contact [email protected].
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