Courageous Woman Who Unites Allergy Bloggers

in Food Allergy Advocates
Published: August 21, 2014

AAHer story is humbling. Two sons with multiple food allergies, and the younger has a host of other medical issues. Kidney problems that required multiple surgeries. A genetic condition called hemihypertrophy which causes one side of the body to be longer or larger than the other. Eosinophilic Esophagitis (EoE) and a feeding tube. Cancer.

Through it all, Jenny Sprague has continued to help other families navigate the world of multiple food allergies through her blog Multiple Food Allergy Help. In 2013, the Maine resident founded and organized (with Homa Woodrum of the OhMahDeeness! blog) the inaugural Food Allergy Bloggers Conference, bringing those who blog about food allergies together to network, learn at sessions, and meet companies that support the needs of food-allergic families. Their second annual bloggers conference, held in September 2014, drew even more bloggers than the first gathering.

Allergic Living pays tribute to Sprague as the latest honoree in our The Allergy Advocates series. Her tenacity, her ability to unite the allergy blogging world under one roof, and her courage to share her own astounding story are remarkable.

In August 2014, senior Allergic Living contributor Claire Gagné spoke to Jenny Sprague about her journey to becoming a leader in the online community.

What drove you to start blogging about food allergies?

When my younger son Jacob was diagnosed with his allergies as an infant I was standing in the grocery store holding a list of all the foods he couldn’t eat: dairy, peanuts, tree nuts, soy and egg. I was completely overwhelmed and I started crying. A mother came up to me and said her child had the same allergies, and introduced me to some brands and products to try.

I thought, “There should be some place on the web where you can just click and say ‘if your child is allergic to this, try feeding them this.’” So I made one. I really wanted to help other families.

What are the biggest challenges you face in dealing with multiple food allergies?

Preparing for anything. I can’t leave the house and go anywhere without preparing food or meals or timing our trips around when Jacob needs to eat. His allergies are so extreme. (He has EoE, a type of allergy in which certain foods can cause severe inflammation and block the esophagus.) With Caleb, I can go to some places and find food for him. At one point they were both reacting to canola oil. That pretty much ruled out dining out, period.

Jacob has had health issues since birth. Tell us about that.

He has had kidney issues since he was in utero. We finally got the kidney issues straightened out, and it was a follow-up ultrasound that discovered the cancer. He was diagnosed with bilateral Wilms’ tumors (a childhood kidney cancer) in August of 2011. That’s also when we found out he has hemihypertrophy.

What was it like to hear the word “cancer”?

It was completely overwhelming. I worried about how it was going to affect my other son. How it was going to affect my marriage. When Jacob was diagnosed, I had already been in the trenches for years with him. I had spent five months running behind him carrying catheter bags that had been surgically implanted into his kidneys to drain his kidneys because his bladder had stopped working.

When you were going through treatments for Jacob’s cancer, did you turn to your blog for support?

Writing the posts for both my blog and my personal Facebook page was difficult. The outpouring of support was honestly uncomfortable – we had donations from churches, strangers, friends, all of which was unexpected but appreciated.

I also saw people complaining online about petty things in life with no concept of the stress, struggle or suffering that I was emotionally going through. I found more support from other families in similar situations, who could understand the jealousy and anger felt towards all those lucky enough to not be dealing with cancer.

photo 5.PNGSprague`s sons Jacob (left) and Caleb.
When did you find out Jacob had EoE?

Right before he started chemotherapy. I was taking him for allergy testing and every time we would go in, we’d test for 20 foods, and he’d be allergic to, say, 16 of them. I kept restricting his diet more and more. A woman who was reading my blog contacted me and said, “have you ever heard of EoE? This is what my children have, and it sounds like it’s what your son has.”

I told the oncologist: “I have to get a grip on his food allergies before we start chemotherapy. I’m worried about how I’m going to keep him healthy enough to fight cancer when I can’t keep him healthy with the food I’m currently feeding him.” A scope confirmed he did indeed have EoE.

What is his attitude towards his condition?

He is a remarkable little boy. He is very accepting and easy-going. He’s happy to go to the allergist or the oncologist: he hops on the scale and gets measured and sticks out his fingers so they can do his blood pressure. It’s routine to him.

He has the gastrosmony tube (G-Tube) now which is how he gets most of his nutrition. There are a few foods he can eat now without getting sick.

He’s happy to eat the foods that are safe for him now. But he also understands that there’s a lot that he can’t have. If we go to a party for instance, he can’t eat the food that other people are eating.

Do you feel you’ve made it past the worst of it? Or do you still feel like you’re in the trenches?

When Jacob was first diagnosed with allergies, he was diagnosed with five foods. By October of his third year, he only had five safe foods. None of them were a protein; there was nothing there that could sustain him. It was very stressful. He was hungry all the time. In the first six weeks of having the G-tube, he put on six pounds. He had been starving.

His cancer is in remission but his hemihypertrophy predisposes him to three different types of childhood cancer, and because he had it in both kidneys, he’s at a higher risk for having a recurrence. We go every three months for follow-up scans and test. He’s closely monitored.

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How old are your sons now?

Jacob will be 5 in September and Caleb is 8.

Why did you and Homa Woodrum start the Food Allergy Bloggers conference?

I attended BlogHer (the big annual bloggers’ conference), a few years ago and it was an amazing experience. Everyone there was so generous and supportive. The whole time I was there I kept thinking, ‘I want this, but I want it with my online food allergy community.’

What was last year’s FAB conference like?

It was magical. In the virtual world that we live in for so many of us, our best friends live in our computer. The people we turn to for advice, the people who cheer us on, who have our backs, the people who cry with us when things go wrong – they live in the computer and are scattered across the country.

I wanted the opportunity to meet these people. It’s one thing to read each other’s blogs, but it’s something different to be able to hug them and thank them.

What are some of the highlights for the 2014 September conference?

Dr. Xiu-Min Li is going to be there in person to talk about the Chinese herbal medicine that she is working on to treat food allergies, which I think is really exciting. Robyn O’Brien, the author of The Unhealthy Truth: How Our Food is Making Us Sick and What We Can Do About It is one of our panelists. She is very excited to be a part of it, as a food-allergy mom herself.

And one of my favorites from last year is back: The Wine and Sign event. Authors can bring their books to sell or you can bring your copy and they will sign it for you. It’s a fun way to showcase what our community has written and for bloggers to learn more about other bloggers out there.

This year’s Food Allergy Bloggers Conference will be held in Las Vegas September 26-28.

See Jenny Sprague’s Multiple Food Allergy Help Facebook page.

More honorees in The Allergy Advocates Series:
Lisa Rutter: A Force of Good for Food Allergy
Karen Harris: Food Allergy’s Educating Dynamo
Cathy Owens: The Nurse Who’s the Allergic Student’s Protector
Gina Mennett Lee: A Voice of Reason for Food Allergy at School, Daycare