A local mother has devoted the last 18 months to identify a mysterious and rare illness causing her otherwise healthy 12-year-old daughter to become gravely ill.
Through her newly gained knowledge Lisa Cooper, of Otterville, hopes to bring awareness about Mass Cell Activation Disease, an illness that caused her daughter Victoria Cooper, 13, to lose the ability to walk, eat and compromised her eyesight. Lisa received a diagnosis for Victoria this spring. After months of tears, sleepless nights and physical and personal anguish, she was diagnosed with MCAD on April 29 by Dr. Lucie Turcotte at the Pediatric Journey Clinic in Minnesota.
“We knew she had it last year, about November, that’s when we finally got the results back,” Lisa told the Democrat recently. “But, there’s not very many doctors in the country for it, so we had to schedule an appointment. Basically I had to research it, I had to do all the research for finding the doctors.”
Through her research, Lisa found Dr. Lawrence Afirin, who dealt with adult MCAD. He then referred her to Dr. Turcotte, a pediatric doctor. Lisa said Turcotte read over Victoria’s case files, which are two-feet deep.
According to the website Mast Cell Aware, Mast Cells are “master regulators” of the immune system. They are produced from bone marrow and are filtered into all parts of the body. Because they carry “powerful biologically active molecules called mediators,” when triggered these substances can produce allergic reactions and inflammatory diseases.
Elusive clues in a rare disease
Victoria’s case began with a broken arm in April 2014 and then broken toes in June 2014 that would not heal.
“That should have been some key indicators, but we didn’t know,” Lisa explained. “Then come October, we’re still in this boot and this happened in June.”
These events led to hospitalizations beginning in October 2014 at University of Missouri Women’s and Children’s Hospital in Columbia and at Children’s Mercy in Kansas City. Victoria, a patient of Dr. Jacqueline Yeats at Katy Trail Community Health, was recommended to be sent to Children’s Mercy. Lisa agreed and believed she would received top-notch care.
“She just kind of spiralled out of control, and we almost lost her there,” Lisa said. “That’s when she lost the ability to walk, (and) see certain things. What we know now, is the mast cell was working on her at that time.”
The Cooper family was gravely disappointed to see Victoria digressing and to see the hospital unable to offer a positive solution to her illness.
During the worst struggle with the yet unnamed disease, Victoria’s intestines stopped working. She could no longer eat by mouth, began throwing up, and eventually had to be fed through a gastrointestinal tube inserted into her stomach.
“They thought it was just like a normal viral infection,” Lisa said. “They didn’t know what it was. It presented somewhat like a flu. I knew, gut instinct-wise, that this was not viral and they were not finding it.”
The family went back and forth to Children’s Mercy several times as they tried to determine what was wrong with Victoria’s intestines. Nothing worked. During one procedure the doctors found eosinophils (a type of white blood cell) in her blood. These cells become active when there is an allergic reaction or infection in the body.
“It also ties together with mast cell,” Lisa noted. “It’s caused because of certain foods you are allergic to … and it kind of mutates into its own little cell and tries to attack you. From her esophagus all the way down to her intestines and bowel, they were attacking it. So, it was shutting everything down.”
The hospital sent the family home once more, informing them that this was a “very debilitating disease,” and told them not to let Victoria have dairy products. In hopes of helping her daughter, Lisa began spending hours researching. She eventually found a support group that became helpful.
“We started trying to figure out, ‘what is this stuff?’” she said. “Some of the things that you read is that these kids end up with tubes to feed them. It was not what I expected.”
Victoria didn’t improve. The hospital decided to place her on “bowel rest” and gave her morphine.
“The morphine caused her to have mini seizures,” Lisa added. “After that, she wasn’t able to walk to the bathroom … I was like, we have to get out of here, something’s not right. They didn’t know what it was.”
A visit to an immunologist helped Victoria to some extent. The doctor gave her a solution that helped the esophagus and digestive tract to heal.
“She was able to start eating, but she wasn’t able to walk,” Lisa said.
‘… mom, I’m going to walk’
Often in chronic pain and now in a wheelchair, Victoria was unable to go to school or lead a normal childhood life.
“We hoped she could go back to school after Christmas; she didn’t,” Lisa said. “She kept getting worse.”
Victoria questioned her mother, “why me?”
“I said ‘God gives His biggest challenges to people so that they can help others, and that’s what you’re going to do someday,’” Lisa said through tears. “She said ‘we’re going to get out of here mom, I’m going to walk.’”
Upon the suggestion of doctors, the family pushed rehabilitation and hoped to see progress. Victoria didn’t improve. Her adrenal glands failed due to steroid medication and she began to swell. To compound matters, the family’s health insurance carrier suggested they place Victoria in a nursing home.
During the worst of her daughter’s illness, Lisa said she kept up with her workload as a buyer for Gardner-Denver in Sedalia, often working from home, hospital rooms, and the rehab facility on her laptop. She also filed for the Family and Medical Leave Act, or FMLA.
In February 2015, friends and family hosted a benefit to help the family take Victoria to Mayo Clinic in Minnesota. The two-week stay at Mayo began to be a turning point for the family.
During the summer of 2015, Victoria was entered into Rusk Rehabilitation Center in Columbia. After weeks of rehabilitation she was discharged Aug. 24, 2015, and was able to walk again.
“My daughter was on a walker, walking down the hallway,” Lisa said. “Something I thought I’d never see again. I thank God for that very moment because that’s when I knew we were going to make it.”
Helping others understand MCAD
Although her health was improving, Victoria still fought against respiratory, viral and anaphylaxis during the months proceeding her discharge. She also worked with Kristin Spencer, a personal trainer at Brian’s Gym, who taught her balance while walking.
At present, on a restricted diet, Victoria seems to be pulling ahead of the disease. She attended Otterville school last semester, began jogging, now loves to swim and hopes to get involved in sports.
Lisa calls her daughter “truly, truly amazing.”
Through all of the months of worry it seemed the Cooper family had reached a stress-free period. Unfortunately, Lisa, who had been recognized as Employee of the Month in April, received the news from Gardner-Denver on June 14 telling her the company was downsizing. She was told she no longer had a job.
“They cut a bunch of staff,” she noted. “They told me they were doing this because of the economy.”
As for Victoria’s illness, both Lisa and Victoria want to raise awareness about MCAD and they hope to speak to groups in the area. Lisa is working on a project to have either Dr. Turcotte or Dr. Afirin come to University Hospital in Columbia to lecture on MCAD.
“We want to get the word out for everybody,” Lisa said. “I want to raise awareness throughout Missouri and everywhere, pretty much.”
For more information call Lisa Cooper at 619-8638 or follow her blog “Housewife of an Amazing Daughter with MCAD” at housewifewithamazingdaughterlivingwithmastcellactivationdisorde.com.
Faith Bemiss can be reached at 530-0289 or @flbemiss.