Two mothers have made it their mission to spread awareness of a rare strand of meningitis after each lost a teenage daughter to the disease.
The strand, called meningitis B, is not protected by the meningitis vaccination the CDC recommends all children get.
Patti Wukovits, from New York State, lost her 17-year-old high school senior Kimberly Coffey, who wanted to be a pediatric nurse, to meningitis B in 2012.
And Michigan mother Alicia Stillman lost her daughter, 19-year-old aspiring comedian Emily, the next year.
Neither Patti nor Alicia knew that their children were not fully protected from meningitis after getting the vaccination for the disease recommended to American families.
Tragic: Kimberly Coffey died of meningitis B during her senior year of high school in 2012 (pictured, left, in her senior photo). Emily Stillman (right) was a sophomore at Kalamazoo College in Michigan when she died of meningitis B in 2013
And at the time of their daughters’ deaths, a vaccination for the strand that killed them was not available.
The US has since approved two different meningitis B vaccinations. However, they are not recommended by the CDC as strongly as other vaccinations that prevent fatal diseases.
Patti and Alicia both said that the reason for this ‘soft’ recommendation is because the government does not think it is cost effective to make every child get the vaccination when the strand of meningitis that killed their daughters is so rare.
But the mothers are now doing everything in their power – creating foundations, organizing fundraisers and educating other parents – to spread awareness of meningitis B.
Here, they share their experiences of how the preventable virus shattered their worlds.
ASPIRING PEDIATRIC NURSE KIMBERLY DIED 3 DAYS BEFORE HER HIGH SCHOOL GRADUATION
Patti Wukovits was sure her 17-year-old daughter Kimberly Coffey had the flu when she came home from her Long Island high school feeling sick on Wednesday June 6, 2012.
Her daughter was a healthy teenager completing the last two weeks of her senior year.
Kimberly had been accepted to Long Island’s Molloy College’s nursing program and she was headed there in the fall of 2012 for her freshman year.
Her dream was to be a pediatric nurse.
Patti described her daughter as ‘the go to friend for all of her friends.’
She said Kimberly’s smile and laugh were contagious and that her daughter was ‘probably the silliest person I ever knew’.
That day five years ago, Kimberly came home and complained of body aches. Her temperature was 101.
Patti, a registered nurse, knew these were tell-tale signs of the flu but she called Kimberly’s pediatrician’s office anyways to see what they recommended.
Patti got married in September of 2012. Kimberly, who was supposed to be her maid of honor, died three months before the wedding. This photo of Patti and Kimberly was taken in 2009 when Kimberly was 15
Her doctor agreed it was probably the flu and said to bring her in the next morning.
But when Kimberly woke up the next morning, on Thursday June 7, three tiny purple dots had appeared on one of her ankles.
‘I knew when I saw these dots she had something going on in her blood,’ Patti said.
She rushed her daughter to the ER where she was immediately diagnosed with meningitis. She was given antibiotics to treat the disease.
When a hospital staff member told Patti her daughter’s diagnosis she did not believe it because Kimberly had gotten the meningitis vaccination.
‘I told her that’s impossible,’ Patti said.
Patti added that she had made sure that her children were protected with every vaccine they should have.
But, as Patti found out that morning, the meningitis vaccination Kimberly had gotten did not protect her from a rare strand of the disease called meningitis B.
Patti Wukovits (right) was shocked to find out that giving her kids Kimberly (left) and Chris (middle) the meningitis vaccination did not mean they were protected from all strands of the life-threatening disease. This was the last photo taken of Patti and both of her children in 2012
WHAT IS MENINGITIS?
Meningitis is caused by bacteria and results in an infection in the spinal cord and brain lining.
It can also lead to blood infections.
The disease commonly occurs among people who seem perfectly healthy and its onset is without warning.
You can catch the disease by being in close contact with someone who has it – such as kissing them or absorbing their germs when they cough.
It is easily spread among people living in tight quarters.
For this reason, it is commonly perceived as a disease that mainly affects students living on college campuses.
Even when treated, the disease kills 10 to 15 of every 100 infected people.
And 10 to 20 of every 100 survivors will be disabled after contracting the disease.
These disabilities include:
- hearing loss
- kidney damage
- brain damage
- nervous system complications
- scarring from skin grafts
It only protected Kimberly from meningitis A, C, W and Y. Patti was shocked.
After Kimberly’s diagnosis, her health deteriorated rapidly.
‘Things happened very, very quickly,’ Patti said. Kimberly’s heart and lungs started failing and she went into cardiac arrest.
‘This is a healthy girl – who was just in school the day before – in cardiac arrest,’ Patti said.
Doctors were able to resuscitate Kimberly.
But as her organs continued to fail, she ended up in a coma and on life support.
Her arms and legs became completely black because her blood was infected. Patti knew that if her daughter survived, she would have to have all her limbs amputated.
Nine days after Kimberly complained of body aches, on Friday, June 15, doctors declared her brain dead.
Patti’s son, Chris, who was 22 at the time, was in an army boot camp in Oklahoma when his younger sister became sick.
He was not allowed to talk to his mother on the phone but Patti contacted the Red Cross, which reached Chris and told him that he needed to travel home to Long Island to say goodbye to his sister.
Once he arrived, Patti then made the heart-breaking decision to take her daughter off life support and Kimberly died that Friday.
At first, Patti and her family thought Kimberly would pull through, but her daughter was in the 15 percent of people who are treated for the disease but ‘just do not survive’.
‘I buried Kimberly in her senior prom dress she never got to wear, three days before graduation,’ Patti said.
‘Kimberly was very full of life. She had a heart of joy,’ Patti said.
COLLEGE SOPHOMORE EMILY WHO DREAMED OF BEING ON SNL DIED AT 19 AFTER COMPLAINING ABOUT A HEADACHE
Emily’s dream was to be a comedian on Saturday Night Live. But her parents told her that she needed to have a back-up plan in case that did not work out. So she double-majored in theater and psychology at Kalamazoo College in Michigan
The following year, Alicia Stillman, a mother-of-three from Michigan, got a call from her daughter, 19-year-old Emily Stillman, who was a sophomore at Kalamazoo College in her home state.
The call came on Thursday, January 31, 2013, at 10.15pm, Alicia recalled. She was already ready for bed, relaxing and reading a book.
Emily called her mom and said she had a headache was feeling ‘achey’.
Alicia said to her: ‘I bet you’re getting the flu.’
Emily told her mom that she thought it was just from a lack of sleep because she had stayed up late studying the night before.
She had been preparing for two huge tests, which she had taken that Thursday.
Emily, whose dream was to be a comedian on SNL, was double majoring in psychology and theater.
She chose psychology because her parents told her that she needed to have a back-up plan in case working in show business did not work out.
But Alicia admitted that her daughter was ‘very, very funny.’ She added that Emily was accepting of everyone.
‘Emily didn’t see color. She just didn’t care. She was very accepting,’ Alicia said.
That night while Emily and Alicia talked on the phone, Alicia told her daughter to take a couple of Motrin and get some sleep.
‘That was the last time I ever spoke to her,’ Alicia said.
Emily lived in a suite with four other people and around midnight she woke up and asked her roommates, who had not yet gone to bed, to take her to the hospital because her headache was extremely painful.
However, she did not call her mother, as her roommates took her to Bronson Methodist Hospital in Kalamazoo.
Alicia suspects that her daughter did not call her that night because she was not worried that the headache was anything too serious.
‘She walked into the hospital and she wasn’t going to die,’ Alicia said.
Since Emily was 19 – and a legal adult – doctors did not have to call Alicia when they treated her daughter.
They treated Emily for a migraine, which she had never had before.
Within hours, Emily lost consciousness. Doctors did a spinal tap and found out that Emily had meningitis.
Alicia got a phone call from the hospital on the morning of Friday, February 1. She was told about Emily’s diagnosis.
Emily (left) is posing with her older sister Karly on a lake in Charlevoix, Michigan, where the girls went to summer camp each year
WHO NEEDS A MENINGITIS VACCINATION?
The CDC says that all children between 11 and 12 should get a meningococcal conjugate vaccine.
There are two types of this vaccine: Menactra and Menveo.
The CDC recommends that children get a booster dose of the vaccine when they are 16.
The vaccinations for meningitis B, Bexsero and Trumenba, are not recommended as strongly as the other meningitis vaccinations.
But the CDC says children aged 10 years old who have an increased risk of getting meningitis B should get one of the two approved vaccines.
Those who have an ‘increased risk’ include:
- children prone to meningitis B because of their proximity to an outbreak
- children who have a damaged spleen
- children who have had their spleen removed
- children taking a medicine called Soliris
- children who have complement component deficiency
‘I really felt it was a misdiagnosis,’ Alicia said. She remembered saying: ‘It’s not possible she has bacterial meningitis.’
She, like Patti, had no idea that her daughter was not fully protected from meningitis since Emily had gotten the recommended vaccination.
‘I knew nothing about it,’ Alicia said.
Alicia’s husband was out of town and Emily’s older sister, Karly, was studying abroad in South America at the time.
So Alicia got in the car alone and drove to Kalamazoo, which was two-and-a-half hours away from her Bloomfield, Michigan, home, by herself to see Emily.
‘I kept thinking: “This is wrong”,’ Alicia said about her car ride to the hospital.
‘“She’s very sick,” that’s what they kept saying,’ Alicia remembered.
‘I had no idea how serious this was going to be.’
During her car ride she called Emily’s pediatrician to make sure that her daughter had, in fact, gotten the meningitis vaccination.
‘I wanted to make sure I was right,’ Alicia said. And she was.
But when she got to the hospital doctors explained to her, as they had done to Patti, what happens when someone who has had the meningitis vaccination contracts the B strand.
Emily’s health went downhill quickly. ‘It progresses so, so fast,’ Alicia said.
The next day on Saturday February 2, before Alicia had wrapped her head around her daughter’s life-threatening diagnosis, Emily passed away.
Emily’s family members made the decision to have Emily’s organs donated to patients who needed them.
Alicia said that her daughter, who was the middle child of her family, was always making people laugh.
‘When Emily would walk into a room, the room lit up,’ Alicia said. ‘When she smiled, her eyes smiled too.’
WHAT PARENTS NEED TO KNOW ABOUT MENINGITIS VACCINATIONS AND THE CDC’S RECOMMENDATIONS
At the time of Kimberly and Emily’s deaths there was no meningitis B vaccination in the US. But other countries had vaccinations for the rare strand.
Soon after they died two meningitis B vaccinations were approved in the US, Trumenba and Bexsero, in 2014 and 2015.
But the recommendations for the vaccinations that that the CDC gives are complicated.
The CDC does not suggest that parents give their children the meningitis B vaccination in the same way that it suggests they give them the vaccination that protects their children from meningitis A, C, W and Y.
I don’t want another parent to feel their child is protected when they are not
While the CDC recommends that all children get a vaccination that protects them from meningitis A, C, W and Y, it only recommends that certain children get the meningitis B vaccine.
Among those are children who are more prone to meningitis B because of their proximity to an outbreak.
The ‘soft’ recommendation that the CDC gives is extremely frustrating for Patti and Alicia, whose lives would be drastically different now had their late daughters received the meningitis B vaccination.
And both mothers now advocate for the requirement of the meningitis B vaccine for everyone.
The CDC reported that there were 375 cases of meningococcal disease in 2015.
Meningitis B makes up one-third of the reported meningitis cases in the US, according to the National Meningitis Association.
Even when treated, meningitis will kill 10 to 15 people out of every 100 who become infected.
The CDC has also reported that 60 percent of meningitis cases among children less than five years old are caused by meningitis B, specifically.
The CDC does not recommend the vaccination that protects people from meningitis B, which killed Emily and Kimberly, as strongly as it recommends the vaccination that prevents meningitis strands A, C, W and Y
‘The risk is small but the tragedy is 100 percent. It should never happen,’ Patti said.
Alicia said: ‘I see the argument. I am an accountant. I see things in black and white like they do. But when it’s your kid that might be the one, it doesn’t matter if it’s one or a million.’
‘[The CDC] kind of said: “You can have it”,’ Alicia added, saying that this was opposed to its stance on the other meningitis vaccination, for which it says people should have it.
Both mothers now spend their time educating parents and doctors about the dangers of meningitis B.
They both created foundations honoring their daughters that raise awareness of the disease.
This photo was from a 2016 Kimberly Coffey Foundation fundraising event. Pictured are Patti, her husband, her son Chris and her two step-children
The Kimberly Coffey Foundation funds a scholarship for a student from Kimberly’s high school – East Islip High School on Long Island – each year.
The scholarship goes to a student who wants to study nursing, since that was Kimberly’s dream.
But all eligible applicants must prove that they have had the meningitis B vaccination.
‘I don’t want another parent to feel their child is protected when they are not,’ Patti said about why she spends her time raising awareness.
Alicia’s family created the Emily Stillman Foundation, which started out educating people about the lifesaving power of the meningitis B vaccination but has since made its mission to educate people about all vaccine-preventable diseases.
‘I speak to kids, doctors, parents. If the doctor isn’t going to educate the parents, if the university isn’t going to educate the parents, who is?’ Alicia said.
Before the first meningitis B vaccination was approved in the US in 2014, Alicia arranged for people to travel to Canada by bus to get vaccinated there.
People flew in from all over the country to Michigan, where she lives, to cross the border and get vaccinated.
This photo was taken during a family vacation in December 2012, right before Emily (second from left) died in February 2013. Pictured are Emily’s father (left), her older sister Karly (middle), her younger brother Zachary (second from right) and her mother, Alicia (right)
‘While we were doing that, we met with the FDA. We said: “This is not okay”,’ she said, referring to the fact that American citizens were having to leave the country to get a life-saving vaccination.
The Emily Stillman Foundation also encourages people to learn about becoming an organ donor since Emily’s organs were donated. ‘That’s a big part of what we do,’ Alicia said.
She added that while some doctors are taking it upon themselves to educate parents about the meningitis B vaccine, even though it is not strongly recommended by the CDC, others are not.
‘To put it bluntly, they just don’t want to be bothered,’ Alicia said.
Both mothers are hopeful that in the future, others will not have to experience the pain of losing a child to a vaccine-preventable disease the way they did.
Patti thinks that eventually, the vaccine that could have saved her daughter’s life will be required for everyone.
‘I believe it will happen someday. And that’s my hope,’ Patti said.
Alicia said: ‘I know that nothing I do will ever be enough for my Emily – but there are millions of other Emilys out there who still do not know the protection is available.’