Mokena teen battling disease survives rough waters
By Susan Demar Lafferty email@example.com March 24, 2013 11:20PM
Mike and Dawn Collins try to comfort their daughter Becca as she struggles with the pain of Batten Disease at their home in Mokena, Illinois, Sunday, March 24, 2013. Her parents have worked incredibly hard to improve life for her and other immobile kids and to bring awareness and raise funds to combat the disease. Their former baby sitter, Amanda Werner, is trying to get Becca to meet Ellen DeGeneres, since Becca loves Dory's voice in "Finding Nemo." | Joseph P. Meier~Sun-Times Media
Updated: April 26, 2013 6:23AM
“When life gets you down, do you wanna know what you’ve got to do? Just keep swimming. Just keep swimming.”
That was Dory’s advice to her fish friends in the movie “Finding Nemo,” but it could very well be the Collins’ family theme.
Dory is certainly the favorite character of their 13-year-old daughter, Becca, who enjoys swimming herself.
There are few things that make Becca smile these days, but Dory, swimming, and her older sister, Natalie, top the list. Diagnosed at age 5 with Batten Disease, the Mokena teen can no longer see, talk or walk, but once in a while, she will crack a smile.
She always loved “Finding Nemo” and would place her little nose up to the TV screen to watch Dory and friends. Her family had the movie transferred to her Ipod and discovered that whenever she has a tantrum, is in pain, or having a rough day, Nemo and Dory help her relax.
“It always calms her down,” her mother, Dawn, said.
Maybe she relates to Dory because she has an Aunt Dory, or maybe the movie is one of the few things she can recall from her childhood, Dawn said.
Her memory loss was the first indication that something was wrong with Becca.
At age 3, she knew her alphabet and her numbers, but later, her preschool teachers told her parents, Dawn and Mike, that she didn’t know her ABCs. She couldn’t run without falling, and then she began to bump into walls.
After meeting with geneticists, neurologists and ophthamologists for two years, Becca finally was diagnosed with Batten Disease, a relatively rare disease that strikes two to four children out of every 100,000 births, according to the Batten Disease Support and Research Association (BDSRA). It is not contagious, curable or treatable. It is, however, what has caused her brain to atrophy and it is currently fatal in all cases.
Becca, who has outlived most kids who are diagnosed at her age, is able to attend Elim Christian School, where she loves to swim, like Dory.
Becca’s former baby sitter and next door neighbor, Amanda Werner, is now on a mission to get this little red-haired girl to meet the real Dory — Ellen DeGeneres.
“I want her to hear Ellen’s voice in person. I want to see her smile,” said Werner, an avid fan of the Ellen DeGeneres Show. She also wants the Collins family to meet the talk show hostess.
“They should all be on the show,” Werner said. “I watch her show every day, and there are always great stories. But this one would blow them all out of the water.”
The Collins family has given back so “selflessly,” she said. “They show their love for their daughter in everything they do. With all they have to do, they are so willing to help others.”
Despite facing such a grim diagnosis, the Collins family has kept on swimming. Mike is on the board of directors for BDSRA, which raises funds not only for research, but to help families who are coping with Batten Disease.
“This is something I can do. I cannot work with human genomes, but I can make a difference in someone else’s life,” Mike Collins said. “I don’t know if we can get a cure, but I do not want a grandchild with this. I want it to go away.”
As a family, they attend BSRA’s annual conferences, which he said, “is better than going to Disney World.”
“It is four days of being with people who understand what we are going through,” Dawn said.
There are activities for siblings, nurses for afflicted childrens and seminars for parents.
They are with people who understand why they can’t control their child, why she has 150 seizures a day, why her muscles go into painful spasms.
Last year, at the conference banquet, was the first year Becca was in so much pain she was unable to dance with her father, Mike said, explaining the emotional toll such a disease has on his family.
For Dawn, it is the agony of seeing her daughter in almost constant pain.
They are determined to raise the awareness of Batten Disease in hopes of raising funds for research, support and a cure.
Their Midwest chapter of BDSRA raised $9,000 at a trivia night. Their older daughter Natalie, 16, raised $1,200 from a lemonade stand, and her Lincoln-Way East High School swim team raised another $400.
Together, they help newly diagnosed families.
Even before Becca’s diagnosis, Mike’s job as an assistive technology provider, has him designing customized wheelchairs and equipment for children in need.
“It helps that I work with other families in need because I can share (stories) with them,” he said.
He also volunteers with The Kids Equipment Network, which refurbishes equipment for special needs children who are underinsured.
While the Collins family talks about Becca’s upcoming procedure to install a baclofen pump to loosen her muscles and reduce the spasticity, they hold her hands, kiss her forehead and speak as if she understands.
“We don’t know what she knows about what’s going on, so we just assume she knows,” Mike said.
“It’s like she wants to come out, but she’s locked in,” Dawn said.
Meanwhile, Werner is trying to drum up public support to get DeGeneres and her producers to take notice of Becca Collins and her family. Since posting Becca’s story on DeGeneres’ Facebook page, she has spread awareness to hundreds of people.
She also has created a Twitter campaign with #findingdory @TheEllenShow and is having T-shirts printed up with that slogan. People all over the world have worn the T-shirts and sent in photos. Proceeds from T-shirt sales will go to BDSRA. (Monday, March 26 is last day for T-shirt sale.)
Werner will host a Wrigleyville bar crawl on April 14 and a pizza party fundraiser on April 28 in Mokena, at a location to be determined. For more information, email Werner at firstname.lastname@example.org.
Meeting DeGeneres may be a long shot, but the Collins family believes in miracles.
“There are little miracles every day, like a smile from a child who is in pain all day,” Mike said.