Her 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.
Next page: Finding EoE and its severe limits, and keeping a positive attitude