WEST BLOOMFIELD — As a sophomore at Kalamazoo College, 19-year-old Emily Stillman’s dream was to perform on Saturday Night Live.
The former Andover High School student and captain of the school’s forensics team was double-majoring in psychology and drama, and her family fully believed she would live her dream in New York one day.
“She was so funny and so talented, so giving,” said her mother, Alicia.
“I really believed she would have made it.”
Around 10 p.m. Jan. 31, 2013, Alicia spoke with Emily on the phone. Emily had just finished studying for two big upcoming exams and told her mother she felt tired and a little sick, and that she was going to bed early that night. It was the last time she would hear her daughter’s voice.
The next day, Alicia and Michael Stillman received a phone call informing them that Emily had been rushed to the hospital in the middle of the night after complaining of a severe headache. They were advised to get to the hospital in Kalamazoo immediately.
“They were treating Emily for a migraine, which is very typical in meningitis patients,” Alicia said.
“They don’t test for meningitis right away, because the only way is through a spinal tap, or a culture that takes a long time to come back.”
Emily’s symptoms continued to progress throughout the day. By the time she was diagnosed with bacterial meningitis, her brain was so severely swollen that she required intubation to breathe, and when her parents arrived, she was already unconscious.
Despite undergoing surgery to attempt to relieve the swelling on her brain, Emily was declared brain-dead Feb. 2, 2013.
A Progression Like No Other
According to the National Meningitis Association, meningococcal disease (bacterial meningitis) is a potentially fatal infection that can cause death or disability within hours. Although a vaccine protects against four of the five strains of the bacteria that make up approximately 70 percent of cases in the United States, no vaccine is currently available in the U.S. to protect against the B-strain — the strain that Emily contracted.
While the Centers for Disease Control and Prevention recommends that adolescents receive an initial vaccination at age 11-12, and again at 16, the vaccine is available for anyone six weeks of age or older.
“I have learned that so many people are not aware even of the vaccination schedules. Babies and kids aren’t being vaccinated, and adults aren’t, either,” Alicia said.
“I’ve been vaccinated, and so have all of my loved ones, above and beyond the recommendations of the CDC. I’ve learned that some people can be carriers, can pick up this bacteria, but not get sick from it. Emily’s system wasn’t strong enough to fight it off, but whoever she was exposed to never came down with the illness.”
While a vaccine for the B-strain is available in Europe, she said, studies are still being conducted in the U.S.
“I’m told that we’re still several years out on that, and you can imagine how angry that makes me feel,” she said.
“That is something I’d like to pursue.”
Meningitis is transmitted through air droplets and contact with infected individuals, and it attaches to the mucosal lining of the nose and throat. The bacteria travel rapidly through the bloodstream and can cause damage to many organs. According to the NMA, the disease is especially significant among college students, especially freshmen living in dormitories and other areas with crowded living conditions. Other risk groups include infants, young children and military personnel.
Early symptoms of bacterial meningitis include sudden onset of fever, headache and stiff neck, often accompanied by nausea, vomiting, sensitivity to light, altered mental status, a purplish rash and seizures. If untreated, the disease progresses rapidly and can cause shock, hearing loss, brain damage, kidney disease, limb amputations and death.
The NMA encourages adolescents and young adults to seek medical treatment immediately if they experience two or more symptoms concurrently, or if the symptoms are sudden and severe.
The Darkest Hour
After the family learned Emily would not make it, “I, of course, had all the normal feelings that any mom would have,” Alicia recalled.
Emily’s sister, Karly, was studying abroad in South America at the time, Alicia said, and “we needed to get her home.”
“I needed them to keep Emily alive, so that her sister would have a chance to say goodbye,” she said.
In the meantime, when hospital personnel approached the Stillmans about speaking to representatives from Gift of Life Michigan regarding the donation of Emily’s organs, Alicia said, she reacted with anguish.
“I said absolutely not! Emily has been though so much already,” she said.
“I told them not to let the Gift of Life people come anywhere near me.”
She sat down to weep, then, and felt what she describes as a shiver on the back of her neck. Now, she knows that shiver was and is Emily.
“I knew instantly that I had done the wrong thing,” she said.
Agonized, Alicia and her husband contacted their rabbi to ask if they should consider organ donation.
“Before this happened, organ donation was something I had never thought of. I wasn’t signed up; I wasn’t a donor. I didn’t even know if this was something Jewish people do,” she said.
“Our rabbi told us it was the biggest blessing we could give. And at the darkest moment of our lives, we decided it was something we needed to do.”
Alicia immediately called the Gift of Life representative back into the room to explain that she had changed her mind.
“They were warm; they were understanding. They knew what a hard decision it was for us. Here I was, telling them they could take my baby apart and send her organs all over the country,” she said.
“We didn’t know what organs they would be able to use, and we never thought about the recipients. We just knew it was the right decision. It was like Emily was guiding us.”
Emily’s ultimate gift ended up saving five lives, including a father of three in Ubly, Mich., who received one of her kidneys, and an endocrinologist and father of two in Cleveland, who received her heart. Both men were so sick, Alicia said, they could no longer participate in their children’s lives. On the worst days, this is what gives her solace.
“I gave these children their fathers back. I’m looking at the lives that have been changed, and the fact that Emily is still living in these people,” she said.
“My husband and I became donors immediately. We’d never thought about it before. I look at these lives she’s changed, and I have to believe this happened for a reason. It’s the only thing that explains how something so horrible could happen to my family.”
Although still reeling from their loss, the Stillmans did not stop at becoming organ donors. In addition to creating The Emily Stillman Fund for meningitis research, Alicia became involved in the National Meningitis Association and flew to Atlanta in June to receive training as a spokesperson. As part of her work, she now speaks to kids, parents and medical professionals to raise awareness on the need for vaccinations, as well as how to recognize the symptoms of bacterial meningitis as early as possible.
“Once the first symptoms appear, the clock starts to tick. The progression of this disease is like no other,” she said.
“It’s a horrible, horrible disease, and these kids get so sick. I believe it was a blessing from God that it stayed in her spinal cord and brain, because many times it does affect other organs, and if it had, we never would have had the opportunity to participate in Gift of Life.”
Nothing Left Unsaid
Seven months later, the surreal and unexpected loss of Emily remains a nightmare to Alicia Stillman.
“I still wake up every morning and think it was a dream — and then I remember what’s going on in my life, and it still feels like a dream. I’m living my worst nightmare,” she said.
“I have a daughter who is 21, and she and Emily were only 20 months apart. When Emily was born, I felt like I was giving (Karly) her best friend. She has to try to get through life now without her sister.”
Emily’s younger brother, Zachary, is a senior in high school, and “is going through all the normal senior activities, college applications.”
“Life goes on for everyone else and we’re trying to keep it as normal as possible. Everyone just goes day by day,” she said.
“We go to a restaurant and we sit at a four-top, now. We always got a round table before, because we were a family of five. That’s a real hurtful thing. We just took our first trip this summer without Emily, and every place we went, we would stand with our back to wherever we were and she wasn’t there. We all just looked at each other. It was very hurtful.”
One comfort Alicia said she has is knowing that nothing was left unsaid between Emily and those she loved.
“Emily never ended a conversation without saying ‘I love you’ to us and to her friends. No one has told us that they wish there was something else they could have said to her,” she said.
“Emily knew how much we loved her, and we knew how much she loved us. We tell her friends to do the same thing, to tell their family and friends that they love them every single day.”
Celebrating Emily’s Gift
On Sept. 18, the Stillmans will join hundreds of other donor families, transplant recipients, family members and patients on the steps of the State Capitol in Lansing for the Donate Life Capitol Celebration.
Gift of Life Michigan spokesperson Tim Makinen said he expects more than 500 people to attend.
“It brings together donor family members, transplant recipients and also those who are still waiting for that gift — those whose lives are now depending on the generosity of someone else,” he said.
“Everyone has the ability to do something really simple that means so much — to join the Michigan Organ Donor Registry. It’s one of those things that takes less than a minute, but could mean years of life for someone else.”
On Sept. 18, the entire Stillman family will finally get to meet the recipient of Emily’s kidney — a meeting that will likely run the emotional gamut for all involved.
“I’m nervous. I’m nervous for the emotions, but I’m excited, too,” Alicia said.
“I feel like he is a part of us now, and I know he feels that we are a part of him. He’s bringing his kids, his parents and all his relatives, and we’re bringing our whole family.”
The Stillmans are also planning to meet with the recipient of Emily’s heart in October, as he is unable to attend the September ceremony.
“He’s bringing his wife and his children to our home, and I can’t wait for that, either,” she said.
“I made this decision in my darkest moment, and it is the one thing now that gives me solace. When I feel Emily’s heart beating in someone else, it’s going be bittersweet I’m sure … but it’s her heart. It’s going to be amazing.”
To add your name to the Michigan Organ Donor Registry, visit www.giftoflifemichigan.org or call (800) 482-4881. Those interested in joining can also do so at any Secretary of State office, or when renewing driver’s licenses/state identification cards online or by mail by checking the organ donor box.
For more information regarding meningitis, visit www.nmaus.org or call (800) 366-3662.
Donations to support meningitis research can be sent to The Emily Stillman Fund at Temple Shir Shalom, 3999 Walnut Lake Road, West Bloomfield, MI, 48232 or by calling (248) 737-8700.
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