SACRAMENTO, Calif. - Army Capt. Shannon Terry and her husband, Randall, started to notice some irregularities in their beautiful baby girl Reagan just a few months after her birth. Like most new parents, they were looking for the milestones of development. Reagan, however, had trouble eating and difficulty gaining weight, was unable to hold her head or move her limbs, and overall appeared fragile for her age.
After a series of tests, the parents’ worst nightmare was confirmed when they were brought into a small room with four doctors and a social worker. Reagan had been diagnosed with spinal muscular atrophy (SMA) type 1.
“I knew it was bad news,” Terry said. “When you find out that you have a daughter that is diagnosed terminally ill by the medical community, you go through different stages of grief — initially for the first couple of days, in my mind, she had already died. After about three days of grieving, I got mad, and I realized that they are not going to take away my opportunity to fight for her.”
Terry said her initial reaction was the same as any mother’s. Then her Army training kicked in.
“As a military officer, I’ve been programmed to react to things in a certain way. … There’s always a solution to a problem,” said Terry, who works full-time as a legislative liaison officer for the California National Guard. “I started to reach out to my fellow soldiers and good friends that I work with at Joint Force Headquarters.”
Through the mass research efforts of her fellow Guard members, family and friends, Terry discovered the Getty Owl Foundation, a Sacramento-based nonprofit that was created after Getty Emelia Storm was born with SMA type 1 in 2010. Terry credits the foundation with saving her daughter’s life.
Reagan was initially misdiagnosed and was therefore relatively old when diagnosed with SMA. She needed immediate intervention, and the Getty Owl Foundation provided the support her family needed.
“They were at my house the first night we contacted them,” Terry said. “Everything happens so fast with SMA, and it literally happened overnight that my daughter lost the ability to swallow. Within a 16-hour period she couldn’t eat, and because of [Getty Owl’s] experience, they were able to get her the treatment she needed.”
SMA is the No. 1 genetic killer of children under 2, according to the nonprofit Hope for SMA, but it also has been designated by the National Institute of Neurological Disorders and Stroke as the neurological disease closest to treatment or cure, Hope for SMA said.
“It is the most common genetic disease that no one has ever heard of. One in 40 people are carriers of this gene, and yet nobody knows what it is,” Terry said. “I believe that the only way to get a cure is to spread enough awareness and to get enough people passionate about this.”
Terry feels it is her mission and duty to spread awareness of SMA, and she is doing so through a Facebook page titled Beautiful Baby Reagan – SMA Type 1. She recently posted the good news that the National Pediatric Research Network Act had been passed by Congress. It will establish a collective network of researchers and promote sharing of resources and money for SMA.
“This is a promising gene therapy program that the Food and Drug Administration recently fast-tracked,” Terry said. “It is funded because of grass roots support from families like mine and Getty’s.”
Terry plans to raise funds and support SMA research until a cure is found. In the meantime, she is receiving tremendous support from her Guard family, which has organized multiple fundraisers for Terry’s family and for SMA research, including a spaghetti dinner, silent auction and comedy night.
“The community of the military has come together to lift me up,” Terry said. “In the military we don’t leave people behind. This is one of the best examples of Soldier care that I have ever seen.”
Terry said that according to the medical community, 80 percent of SMA patients will die before their first birthday, and all will die before their second. But Terry has a friend whose son has SMA and celebrated his 10th birthday about six months ago.
“The medical community calls this disease terminal, and for a second we believed them,” she said. “We are not willing to let her go that easily, and we are doing everything we can, everything in our power, to fight for her.
And there is reason for optimism. During a recent visit to Reagan’s neurologist, the doctor pulled his glasses down, looked at the baby and said, “This does not look like SMA. This is not the same baby. She looks like she’s getting better.”
Though Reagan’s disorder has been difficult for the whole family, Terry said good has come out of it as well.
“I thought that [deploying] to Iraq was an eye-opening experience, but it’s even more of a life-changing experience when you are reminded of the true good in people,” she said. “I meet strangers who hear about her story who are touched. We have people all over the world praying for her.”
She added that she is thankful for her beautiful baby and wouldn’t change anything about her.
“I’m grateful that her life, even if it is cut short, will be nothing but love. She’s surrounded by that every day,” Terry said.
For more information on the Getty Owl Foundation, visit www.gettyowl.org.