EDITOR’S NOTE: This story has been edited for clarity and fairness.
Ginger Mummery does not see herself as a strong woman.
“They always say, ‘I could not go on,’ ” she said in reference to losing a child. “What, should I just leave Madison and Cooper? I have to go on. I struggle every day.”
Mummery was referring to the two surviving children from the four she’s given birth to.
“Madison asked me the other night, ‘What would this house be like if both my sisters were alive?’ ” she said. “I wish I knew.”
But Mummery and her husband Michael are strong.
Despite parenting four children, they have never had more than two in their home. Nine days after Madison and her twin sister Kalista were born, Kalista died from a rare genetic disorder known as Methylmalonicacidemia or MMA, which does not allow the body to properly break down protein, leading to kidney and liver failure. The condition is so rare, affecting 1 in 50,000 to 100,000 people, the couple didn’t have time to react.
“By the time they realized what it was and started poking her, it was too late,” Ginger said.
In a healthy person, MMA levels are less than 0.3. Kalista’s was over 2,000.
The Mummery’s learned both mother and father must carry the gene and there is a 1-in-4 chance a child becomes inflicted.
They met on a cruise, Michael from Canada, Ginger from Windsor.
“What are the odds?” Ginger said from their Windsor home Thursday evening. “Middle of the ocean, two different countries, and we both had that stupid gene.”
But they moved on.
A few years later, Ginger was pregnant again. This baby did not have the condition. But just 11 months after Kalea was born, she died.
She died under the care of a trusted home provider.
“She was a wonderful woman,” Michael said of the caregiver Ginger’s family had used and known for many years. “She was a great provider.”
Garrett Moore, 35 at the time, was caring for children under the license of his mother, Janette Moore, and in her home.
He told police that Kalea became restless, so he laid her down to nap in a playpen while he made lunch. When he checked 35 minutes later, she was not breathing.
Kalea was flown to Medical Center of the Rockies in Loveland and subsequently taken to The Children’s Hospital, where she was taken off life support after her parents donated some of her organs.
So again, the couple moved on.
That Christmas, Madison asked Santa for a unique gift.
“I didn’t care if it was a boy or girl,” the soon-to-be 7-year-old said. “I just wanted another baby.”
The couple, who have been married 11 years, prayed they were making the right choice and moved ahead planning another pregnancy.
“It felt like a death sentence,” Michael said of the day they learned their unborn son had MMA.
“There is a 1-in-4 chance,” Ginger said. “We had two. We just could not believe it.”
Ginger immediately started B-12 injections as well as other protein supplements. The goal was to have the baby born with MMA levels below 100.
They were told from the beginning that Ginger, an RN in the Emergency Department at North Colorado Medical Center, would never nurse, and it was likely Cooper would be a boy in a plastic bubble, never able to lead a normal life.
“The entire genetics team gathered around us and said, ‘Nurse away, his numbers are a five,” she said. “I will never forget that moment. We just couldn’t believe it.”
He was a little miracle child. Doctors still can’t believe his story. He has no restrictions at the moment, but it will always be a battle.
He takes B-12 injections daily and protein supplements. And even a minor cold will land him back in the hospital.
But Michael and Ginger and Madison don’t care. They have him, and they are going to make sure they do everything they can to make sure he gets a normal life. Ginger’s mom cares for their kids while they work.
“I am very fortunate I have her,” she said. “I don’t know that I would ever trust anyone else.”
But the family also needs to honor those who are no longer with them. They continue to lobby state lawmakers to make home child care laws more stringent and force providers to be insured. The Mummerys were well insured, but they worry about other families who are not.
“Kalea’s medical bills were $200,000,” Michael said.
They also want to give back to the community that rallied around them in so many times of need.
After Kalea died, a friend organized a fundraiser to help the family. The family was so overwhelmed with donations they gave most of it to other causes in Windsor, including a scholarship to Windsor High School students who pursue a medical or first-responder occupation; the Windsor-Severance Fire Protection District, which has used the money to buy equipment needed for infants on their trucks; and other things they call RAKs, or Random Acts of Kindness, such as taking all the ornaments off the giving tree during Christmas at the Windsor King Soopers and buying all the toys for the kids on the tree.
They have continued the practice the past two years by hosting fundraisers in Kalea’s name.
“We are trying to make a positive out of something negative,” Michael said.
This year’s event is 2-5 p.m. Saturday at Chipper’s Lanes on Horsetooth in Fort Collins. Teams of six will compete for prizes as well as silent auctions and raffles. All proceeds will go to the Kalea Mummery Fund.
“We just want to thank everybody for the support they have given us through all this,” Ginger said. “We could not do it without them.”