Waffle and Ezra: More Than Just a Dog
A story of companionship, instinct and life-changing support
Every family affected by ectodermal dysplasia has their own unique journey. For the Jones family, support arrived in an unexpected form — a rescue dog named Waffle. What began as a search for companionship has become a remarkable story of instinct, trust and life-changing support. We are grateful to the Jones family for sharing their story.
Our Family’s Journey to Diagnosis
We are the Jones family, and Ectodermal Dysplasia (WNT10A) is part of our daily lives. My husband and both of our sons, Ezra and Eli, live with this complex condition.
Ezra, our eldest, was born appearing healthy, but as he grew, a range of medical challenges began to emerge. It wasn’t until after Eli was born—and initially tested for Cystic Fibrosis due to serious lung issues—that we finally received a diagnosis of Ectodermal Dysplasia. For the first time, so many unanswered questions began to make sense.
Both boys are affected differently. Eli has a very weak immune system and is frequently hospitalised. Ezra lives with multiple ongoing challenges not all related to ED, but one of the most serious is his inability to regulate his body temperature.
Living with Temperature Regulation Challenges
Ezra’s temperature can rise dangerously high—above 40°C—very quickly and without much warning. Managing this is a constant concern for our family and affects many aspects of daily life.
For families affected by Ectodermal Dysplasia, difficulties regulating body temperature can be one of the most challenging symptoms to manage. Knowing when a child is becoming too hot and acting quickly can be vital.
Finding Waffle
A few years ago, we were advised to consider an assistance dog. After a difficult period, we made the decision in December to adopt a rescue dog—and that’s when we found Waffle.
From the moment Waffle met Ezra, it was clear she was special. She instinctively comforted him, gently resting her head on his hands and calming his anxiety.
What we didn’t expect was just how intuitive she would be.
From her very first night at home, Waffle began showing natural alerting behaviours—responding when the boys were becoming too hot or when something didn’t seem right. These were not trained behaviours at the time; they were entirely instinctive.
The Difference Waffle Has Made
Since Waffle joined our family, she has made a life-changing difference.
Most notably, she has helped us avoid overnight hospital admissions for five months—the longest period we’ve ever gone without one.
Her presence provides reassurance, comfort and an extra level of support that we never imagined possible.
Training to Become a Medical Detection Dog
Now, Waffle is undergoing formal training with Helpful Hounds to become a fully qualified medical detection dog.
Using Ezra’s saliva samples taken at different temperatures and pain levels, she is learning to accurately detect subtle but critical changes in his condition before we would notice them—especially dangerous rises in body temperature.
Her alerts will not only support us at home but will also play an essential role in keeping Ezra safe in everyday life.
As her training progresses, we hope Waffle’s abilities will continue to provide greater independence, confidence and safety for Ezra.
More Than Just a Dog
Waffle is much more than a pet—she is a vital part of our family and an extra layer of safety, independence, and reassurance for Ezra.
Quite simply, she is changing our lives.
Learn More About Temperature Regulation and Ectodermal Dysplasia
Many people with Ectodermal Dysplasia experience difficulties regulating their body temperature, which can make overheating a serious and sometimes life-threatening risk.
The ED Society provides information, support and practical guidance to help individuals and families manage temperature regulation safely throughout the year.
If you would like to learn more, please explore our temperature regulation resources and support information.