Rachel Burkinshaw, 37, from Somerset, is determined to make life as normal as possible for her two children (pictured right) who both have food allergies.
Ten-year-old Grace was diagnosed with gluten and milk allergies when she was a baby and is used to life with a restricted diet.
Eight-year-old Morgan has Eosinophilic Gastrointestinal Disease, a rare bowel condition that’s closely linked with severe allergies. Rachel also has Type 1 diabetes, while her husband is lactose intolerant.
Here she tells us how the family don’t let their allergies and medical conditions get in the way of doing the things they love.
The Relief of Diagnosis
Being diagnosed with a rare condition and a series of food allergies is by no means easy to take. But for Rachel, discovering what was wrong with Morgan after seven years of uncertainty was a huge relief.
“Morgan was never a healthy child. We always knew something wasn’t quite right and spent ages going backwards and forwards to doctors. It was only three years ago when he was referred to Great Ormond Street Hospital that we started to get some answers.
“After such as long battle it was a relief when he was diagnosed, but then there was the challenge of having to deal with such a rare condition.”
Along with the pain and discomfort of an unusual inflammatory bowel disease, Morgan also has several food allergies and suddenly had to alter his diet.
“Not a great deal of research has been done on Morgan’s condition but it does sit alongside complex food allergies, which are difficult to manage,” says Rachel.
Morgan’s Food Allergies
As well as some common food allergies, Morgan also has mild allergic reactions to certain fruit and vegetables.
Immediately changing Morgan’s diet was no easy task for Rachel and she spent a lot of time trying to alter recipes.
“Typically if you’re dairy-free they tend to give you soya, which he’s also allergic to. If you’re gluten-free you’d have things like potato flour which he can’t have either.
“I do a lot of cooking from scratch and I’ve become a bit of a self-taught expert in altering recipes.”
Rachel has developed her own free-from recipes to suit the family.
“I make things like roast chicken with sweet potatoes, free from pasta with chicken or tuna, risotto or anything I can cook from scratch.
“Morgan loves sausages but it’s hard to find ones that don’t contain gluten or potato. He’s very good though and loves ham and fish. I tell him all the time he could win awards for how healthy his packed lunches are.”
Eating out for a family with so many dietary issues is no easy task, but Rachel does everything in her power to make sure Morgan and Grace live their lives as any child would.
“We do eat out sometimes but it can be very difficult, particularly with cross-contamination fears,” says Rachel.
“Morgan recently was invited to a birthday party at a fast food restaurant. There’s literally nothing he can eat there, but he still wanted to go, so I made him a packed lunch to take. He always says ‘I know I’m different but that’s ok’.
“Grace has the same attitude and she’s very good at asking what she can have when going to sleepovers.”
Finding ID Bracelets for Ever-Changing Allergies
Pictured right: Grace and Morgan wearing their matching allergy alert wristbands.
Rachel knew about the importance of medical ID jewellery from having diabetes herself, but was unsure if there’d be something suitable for Morgan and Grace.
“Morgan’s medication and allergies are always changing, so engraved or printed medical jewellery wouldn’t be suitable.
“We suspect Grace may have a milder version of the bowel condition so it’s likely her allergies will change in the future as well.”
The standard metal medical alert bracelets Rachel knew of also weren’t child friendly, so she pushed the idea to the back of her mind.
“I noticed one of Morgan’s friends wearing a trendy orange medical wristband, so I went online to see what’s out there.
Pictured above: Morgan’s information strip kept safe inside the band
“I immediately found a Velcro wristband with camouflage detailing which I knew Morgan would love. The information strip in the inner pocket had plenty of space where I could write his allergy details as well.”
Morgan couldn’t wait to try on his wristband when it arrived and wears it all the time.
“Even in the heat on our recent holiday to Florida he was happy to wear his wristband 24/7.
“I was unsure whether Grace would wear one as she’s a little bit older, but she was soon nagging me after seeing Morgan’s, so I got her the same wristband but in pink.”
Reach out for Support
With Morgan having such a rare condition, life can be quite isolating for Rachel sometimes. Reaching out to online communities can be comforting for her and a good way to share tips.
“I work closely with a charity called FABED which stands for Families Affected by Eosinophilic Disorders – the condition that Morgan has. The kids often get involved with fundraising doing things like bake sales, so it’s comforting for them too.
“I think with having diabetes I can empathise with what Morgan is going through and I just get on with things. My husband often thinks ‘why us, why do we have to go through this’ – it’s important to reach out and talk to people when you’re feeling like this.”
Preparing for Holidays and Activities
For Rachel, it’s important the family’s allergies and medical conditions don’t get in the way of having fun.
“We go on holiday every year. My husband and I love travelling and it’s something we wanted the kids to experience so we were determined to make that happen.”
With the right preparation, even a three week holiday to Walt Disney World in Florida is achievable.
“The food at the Disney resorts was really good. You’d get a slip of paper where you could tick off your food allergies and the chef would come out and ask the children what they wanted to eat.
“It’s just a case of doing your research. There was a little mix up on the flight over in that Morgan’s meal had been mismatched with someone else’s who also had dietary requirements. We got the right one in the end, I’m always on my toes and prepared for situations like that.”
Peace of Mind
The fact that they always wear their ID bands gives Rachel peace of mind when they’re out doing activities.
“It’s just nice to know when they’re out and about they’ve got something that reminds people of their allergies. Worst case scenario if anything happens to them, all their condition details are there to hand.
“As they’re waterproof, the bands are also really useful for holidays.
“Preparing and being ultra organised with things like this helps me keep things as normal as possible for us as a family.”
Read more of Rachel’s advice about allergies in her blog – 7yearstodiagnosis.com