The community is rallying together to raise funds for a Hicksville native who has been battling to get a service dog.
Nancy Burpee is a 49-year-old competitive swimmer and single mother with a rare genetic terminal illness called Ehlers-Danlos Syndrome (EDS), which causes the deterioration of the connective tissues, tendons, ligaments and vital organs.
Burpee refuses to let anything stop her from pursuing her dreams and defies all of the odds. Even her illness, which doctors say should have taken her life 10 years ago, can’t stop her. In fact she refuses to even utter the word, “can’t”.
“The C-word is not in my vocabulary,” Burpee said with a laugh. “I won’t even let my son Gunnar use the word.”
With her “can do” attitude, it is no wonder Burpee has accomplished so much and inspired so many.
Among her long list of accomplishments is being a Gold Medal Paralympic swimmer. She holds world records in the 50 and 100-meter freestyles, where she competes against, and frequently beats, able-bodied swimmers, all while using only her upper body to swim. “I’ve lost most of the ligaments in my legs,” explained Burpee. “So I can only use my arms.”
Her entire life, she showed signs of her illness, suffering her first broken bone at the tender age of 18 months. She then broke one bone after another throughout her childhood, but doctors didn’t have a diagnosis. They attributed all of her broken bones to her being an “aggressive athlete.”
It wasn’t until 1995, at age 30, that she received the correct diagnosis of EDS. Ten years later came another staggering diagnosis—breast cancer. Never one for self pity or allowing an obstacle to stand in her way, she told doctors who had recommended the removal of only her left breast to perform a double-mastectomy.
“I don’t have time for cancer, remove both breasts and you remove the risk,” Burpee told them. “Plus, I’m a swimmer and breasts just slowed me down.”
That determination serves her well where she feels most at home— in the lap lanes of a pool. Always in constant pain because medications no longer help, Burpee pushes through it. Each stroke potentially brings its own troubles.
“Since my legs drag behind me, every time I go up and down my knees dislocate and my hips dislocate,” said Burpee. “But I have to ignore the pain and keep going.” In spite of all of this, she usually pulls out a win.
The faith-driven Burpee refuses to take the credit for any of her wins. “God gets all of the glory, he is the reason I can do any of this and deserves the credit.”
Even simple everyday activities that most people take for granted can cause Burpee an injury. “I broke two ribs just getting out of bed,” said Burpee. “That’s why I need a service dog.”
The service dog will help Burpee get out of the pool, help her to get on the swimmers block and help her at home. Due to the extensive training it must receive, a service dog costs about $15,000, which is out of the price range for Burpee, who is on disability. Spearheading the campaign to help raise the funds for a dog for Burpee is Ben Andujar, the owner and head trainer of East Coast Working Dogs. When he heard Burpee’s story he said he was compelled to step in.
“She is such a beautiful person and so determined. Her story really pulled on my heartstrings,” said Andujar.
To find out more and to make a donation, visit the Go Fund Me “Get Nancy A Service Dog” page at www.gofundme.com/ejzf5w
