Mother of daughter with Trisomy invents new tech to help sick children

The News-Sentinal has a remarkable, uplifting story of a young girl living with Trisomy 18, and her mother’s inspirational efforts which give additional meaning to the old phrase that ‘necessity is the mother of invention’.  

 
As Jennifer L. Boen writing for the paper reports: 
 
Biomedical engineer Melanie Watson had plenty to grapple with when prenatal tests during her second trimester revealed her daughter, the second-born of two, had a very serious genetic condition called trisomy 18. In this condition, instead of normal two chromosomes on the 18th chromosomal pair, there are three.

“She is my miracle baby,” Watson said of Claire Juliette Watson-Ray, now 5∏. It’s important to get the one-half in there “because every day counts,” said the Trine University assistant professor of biomedical engineering, who earned her undergraduate and doctorate degrees from Louisiana Tech.

Watson has fought every day for her fragile daughter’s life, not accepting the no-hope pronouncement given by doctors at the Texas hospital where Claire was born and not giving up when Claire, at age 14 months, was diagnosed with liver cancer.

That tenacity and resolve to give Claire the highest quality of life possible is what also led Watson on a journey to seek an innovative solution to quickly and easily perform routine blood tests so Claire — and anyone with a health condition that requires frequent blood testing – can do so wherever and whenever they want, with results sent via a cell phone to the doctor.

The eighth version of the hand-held, blood-testing device prototype is now being 3-D printed, and Watson is in the process of patenting the invention. It is the culmination of more than five years of research and development, and Watson’s entrepreneurial endeavors through her company Blaire Biomedical have drawn high praise from regional and state funders. She was recently named one of two first awardees of support through Indiana’s Elevate Ventures’ new Community Ideation Fund.

The fund, created in 2018, enables ideation-stage high-potential companies to move closer to a specific, measurable technology or product development milestones through an investment between $5,000 and $20,000. Eligible applicants include Indiana-based companies with headquarters in communities under a partnership with Elevate Ventures, and with no more than $50,000 in trailing revenue over the past 12-month period.

Elevate Ventures, a venture development organization based in Indianapolis, Ind., provides entrepreneurs with the expertise and resources needed to transform ideas into profit-making companies. The Community Ideation Fund $17,500 convertible note will help Watson move ahead with final development of the blood-testing device by hiring a part-time design engineer.

“We need to improve the optics (in the device) in order to increase the accuracy of blood tests,” Watson said, noting this funding and a recent $1,000 micro-grant from the Elevate Northeast Indiana Farnsworth Fund, plus additional funding she is seeking through other regional and state sources is crucial. “It is essential for up-and-coming entrepreneurs to get into the seed round to draw venture capitalists and angel investors.”

Already available is a hand-held blood glucose testing device that operates similarly through a phone app, but Watson said there is no other such device on the market that can perform multiple blood tests.

The adage, “necessity is the mother of invention,” rings true in Watson’s story of the development of the device. Claire was admitted to a hospice facility after staff at the hospital where she was born said Claire had no future. The hospice caregivers taught Watson how to tend to Claire’s specialized needs. The baby stabilized and two weeks later Watson took her home.

When Watson couldn’t find a local surgeon who was willing to operate on Claire, she took her to Texas Children’s Hospital in Houston. Claire’s heart defects were repaired, and she began thriving. Then the terrible discovery of two liver tumors was made a year later. Surgery was successful to remove the golf-ball sized tumors, and Claire began chemotherapy. It was a more than a four-hour drive from their home in Longview, Texas, to Houston for the frequent blood tests Claire needed between chemo treatments and after.

“I thought, ‘There has to be a better way. I’m a biomedical engineer. I’ve got to figure this out,'” Watson recalled. And she did, putting more than $5,000 of her own money in research and development. In 2015, she left Texas to take a teaching position at Trine. She enlisted the help of students, assigning work on the device as part of their senior design project.

“The students accomplished a lot,” Watson said, also crediting Trine for financial support toward project supplies. “We want to empower patients with hand-held medical technology,” Watson said. “This is so patient-centric.”

Dr. Michael Mirro, Elevate Northeast Indiana board member and senior vice president and chief academic research officer of Parkview Mirro Center for Research and Innovation, concurs. In a press statement following Watson’s Farnsworth Fund award, he said, “Her solution negates the need for patients to go to the lab and allows them to take control of the timing of testing, which is perfect for patients with chronic conditions and limited mobility.”

Vicky Wall of Every Life Counts said that this was a truly inspirational story which showed the need for medics to listen to parents and respect the new evidence that showed that interventions can be helpful for babies diagnosed with Trisomy 13 or 18. 
 
“It’s also a story which shows what happens when abortion is not pushed on parents in situations where baby has a life-limiting condition. This wonderful mother hasn’t just cared for her daughter she has made an invention to help others so that shows what happens when we choose love.”