Tessa Gilton is not your average 30-something. To the naked eye her uniqueness may seem obvious; it is the unseen, however, and the nature of her spirit which is testament to who she is and why.
Gilton was born premature at 29 weeks and was born with Amniotic Band Syndrome (ABS).
“It usually affects arms or legs, always hands or feet,” she shared.
Gilton is missing fingers on both her left and right hands. Her right leg was amputated in the womb from the ankle down and she was born with a severely club left foot.
“My big toe almost touched my ankle,” she stated.
It was a condition that resulted in multiple surgeries beginning at six-months-old and concluding with the most recent in 2015. But don’t tell Gilton that such circumstances make her different than the person standing next to her, because she won’t buy it.
As the oldest of three children, Gilton’s mindset and drive may be best defined by the leadership of her parents from as early as her preemie days in the hospital. As customary the first-time parents were anxious to take their newborn home. At five weeks old and with a bit of medical reservation over not yet reaching a target weight of five pounds, Gilton was released from the hospital.
“My dad convinced them to let me go home,” Gilton said. “He told the doctor, if she had the rest of her leg she would make the five pounds.”
The family of three went home that day.
“I honestly never knew that much was different,” Gilton added of her physical differences and what some might perceive as inability.
From six-months-old until the age of five her left foot was recast weekly at UCSF to aid with its reshaping and repair. Gilton took her first steps at 15 months of age with a cast on her left foot and a prosthetic on her right. She received her first prosthetic at nine months of age.
Her childhood was not dissimilar to that of her friends or family. She participated in annual jog-a-thons, played softball, volleyball and swam on rec as well as high school teams.
“My parents wanted me to be very independent,” she said. “They never coddled me. They wanted me to do things for myself. They never told me I couldn’t. Can’t was not in our vocabulary.”
It was not until recently that Gilton began to truly feel the effects of physical challenges as time and wear began to take a toll on her left foot and her ankle joints started failing her. A challenge which has resulted in three surgeries in the past 10 years.
With each surgery, Gilton would have to leave her home to live with her parents during recovery, a period of time which is typically 18 months in duration.
“You can’t do crutches with a prosthetic,” she said, hence requiring the move to mom and dad’s.
Following rehab from her 2015 foot surgery, Gilton learned she would be facing two more surgeries to aid in relieving the constant pain. All totaled three years of her life where she would need to return to being dependent on her parents. Through a private social media page for those faced by or living with ABS (an extremely rare condition) Gilton learned of ExoSym, a device which could offer support to her left leg releasing the pressure and pain.
“It was excruciating pain all the time,” she said of her leg as she pondered the thought of two more surgeries. The result of time spent on one limb was proving to get the best of her left side.
It was a harsh and daunting reality for a person who never considered herself as disabled or different in any way.
The ExoSym seemed a plausible possibility.
Through following the journey of an “internet friend” Gilton made via the private Facebook group, her interest grew and hope increased.
“At first I was a little intimidated,” Gilton admitted of the discovery and placing herself in the same category of the recipients. Many are veterans working to return to their field via the help of such technology.
“It’s like an external prosthetic,” she continued. “It does the work of my foot and ankle for me.”
Despite her hesitation, Gilton reached out to the company through an application process to inquire if she might be a candidate – she was. As is common with most medical technological advances, the device was not covered by insurance and the expense was high. So … the 30-something sat on the idea and reconsidered her options.
Earlier this year, as her pain continued her doctor informed her she would need to decide. Time for preservation of her working limbs was imminent.
“I knew this was what I wanted to do,” she said of committing to travels to Washington and seeing the process through.
Not one to burden others, Gilton kept the conversation of cost limited to her family and a few close friends. Proving to be more than friends but advocates for her health, a YouCaring page was created to help cover the ExoSym cost. Within 30 days of the initial post, the total amount needed was secured via the page.
“I’d just cry every day for a whole month,” Gilton said of the generosity. “Every time I would go online and someone would comment or share on Facebook, I’d just cry.
“This has just been a humbling experience,” she continued. “Just the outpouring of love. It’s overwhelming and humbling.”
In mid-June Gilton traveled to Gig Harbor, Washington to be fitted with her ExoSym. While there she also began an introductory program through physical therapy.
“What he’s doing there is amazing,” she said of inventor Ryan Blanck and the Hanger Clinic. “It’s really a miracle, because I don’t have pain. I’m walking pain free and I ran. I haven’t run since I was 12 years old.”
The ExoSym recipient shared her initial hope was simple: to feel less pain. As a result of her time spent at the clinic and adjusting to the device she now has new goals set and feels as if she is back to being “Tessa.”
“I never fathomed this would happen,” she said of her renewed outlook and future hopes.
“I told a friend the other day, I would have sold my house, I would have paid four million dollars and made payments the rest of my life because it’s changed my whole life,” she confessed.
Gilton admits allowing others to intercede and come to her aid was beyond her comfort zone, yet equally helped in her personal growth, noting that allowing others to help can be just as much for them as it is for the recipient.
“Now every week’s a party,” she said. “Every week’s a celebration. The biggest thing that I kept getting emotional about was just walking and standing and not feeling pain.”
Something that most people take for granted, Gilton is finally getting to experience.
“It’s just life changing,” she said of the device. “And that so many people would just give because ‘Tessa needs to walk better and this is what is gonna help her’ … It makes me feel so loved, so cared for and so seen.”
For more information on the Hanger Clinic, ExoSym and other advances they offer visit www.hangerclinic.com.