Beth and Dan Gore have a most extraordinary family. Over the past dozen years, the Brandon, Fla., couple has adopted six children with disabilities, the youngest being Manny, a 3-year-old with congenital muscular dystrophy.
Meet Manny. He's one of six children with disabilities adopted by Beth and Dan Gore of Brandon, Fla. Three-year-old Manny — who has merosin-deficient congenital muscular dystrophy and has been in and out of the hospital due to gastrointestinal, respiratory and cardiac issues — is the subject of Beth’s fifth published children’s book, Mighty Manny.
|Three-year old Manny Gore has a form of congenital muscular dystrophy.|
“As we have gone through all the events of his life so far, he is my inspiration,” says Beth, who together with her husband, co-pastors Destiny House Church. “Daily he inspires me to be a better person and to make the world a better place. I hope that his book can provide that same inspiration to many more people.”
When Manny joined the Gore family in 2009, the 9-month-old had just been released from a monthlong hospital stay, during which he received a feeding tube and surgery to try to prevent fluid from going into his lungs. His muscles were so weak that he couldn’t move his legs or turn his head beyond a fraction of an inch, and his hands were constantly in tight fists. Manny’s eyes were the only things he could move.
Over the years, Manny has made major improvements due to interacting with his five older siblings. They have helped him build neck strength, since he’d try to turn his head to see what they were doing around him. In addition, Manny’s sister, Kaley, would place objects in his hands to help open them.
“Every day he’d be able to do something he couldn’t do the day before,” says Beth. “I attribute much of his skill gain due to the interacting he did with his siblings and with me, because we worked constantly on skills and how to attain the next one. We disguised it as play, but he was in therapy every waking moment.”
Today, Manny is a happy 3-year-old who loves listening to music and dancing, playing with Legos and the family Yorkshire terrier, and trying to keep up with his siblings in his power wheelchair. Even though he needs constant care and still spends time in the hospital for complications, Manny has made many improvements in his short lifetime.
“We celebrate all the little things that Manny can do,” says Beth. As part of that celebration, Manny was profiled this year on his local broadcast of MDA SHOW of STRENGTH™.
When she was 15, Beth knew she wanted to adopt a little girl from China after reading an article about China’s “one-child policy” and how Chinese girls were being abandoned in favor of sons. She says she knew that she’d adopt a Chinese daughter after she furthered her education, became a teacher and married a man who also wanted to adopt children. But Beth never guessed that the number of children she’d adopt would eventually grow to six.
In 1993, she met her husband, Dan, at a church convention and married him on Christmas day a year later. When it was time to start their family, the couple learned that they had to be 35 years old to adopt a child from China. Since they were in their late 20s at the time, the couple put their plans on hold and started researching local adoption. A special-needs program sparked their interest. To add fuel to the fire, statistics showed that children with special needs are rarely adopted.
“The further we investigated, the more we knew this was what we were called to do,” says Beth, who’s a master trainer for Dale Carnegie Training and a motivational speaker on the topics of Christianity, disabilities and adoption. “We thought they deserved the chance at a family, too.”
In 2000, the Gores welcomed a pair of siblings into their family. Fourteen-year-old Jacob, who has autism and a rare kidney disorder, was adopted at 18 months. Upon discovering that he had a 2-month-old sister with a blood disorder, they immediately adopted Kaley, who is now 13. Beth homeschools Jacob and Kaley.
But they were just getting started. In 2001, the Gores expanded their family by adopting 19-day-old Sam, who has developmental disabilities and is now 11. Two years later, Sam’s brother, Luke, was born, and the Gores adopted him. Now 9, Luke has spina bifida and a heart defect.
In 2007, the couple finally was able to adopt a 2-year-old girl from China. They named her Zoe, which means “life” in Greek. Seven-year-old Zoe, who has a cleft lip and palate, was a long-awaited addition to the Gore family.
“As time went on, we became more adept at parenting, and we got resources and systems in place to be able to handle more complicated special needs,” says Beth.
|A counselor gives Manny a swing ride during a visit to MDA summer camp in Brandon, Fla.|
Having six children is a balancing act all on its own. Add in disabilities and special needs, and things get even more interesting. Beth says that five of her six children only need minimal care, such as medications and doctor visits. Although “all of our children have needs that could arise in a moment that could require major therapies, long hospitalizations or intense treatments,” Beth says that — at present — life is relatively stable for most of the kids.
Needing round-the-clock care, Manny requires the most assistance, including frequent hospitals stays. Beth finds that working part time with an extremely flexible schedule (mostly evenings and weekends), allows her to balance Manny’s care and the needs of her other children. Sometimes she even takes Manny with her to training sessions.
“I make impossible decisions daily and never know if I’m making the right one,” says Beth. “I often go to bed concerned about each of my children and if I’m doing what they need to help them become healthy, happy, productive grown-ups some day.”
She constantly worries about Manny.
“Some days are much harder than others, and I barely lie down in my bed before I fall asleep,” she says. “But there are also those ‘magical’ days that just seem to go so perfectly that you wish you could capture them, and those days keep me going.”
When Beth is at the hospital with Manny, her parents or Dan take care of the other children, and women from church bring dinners or help clean the house. She feels fortunate that she has a “huge support group to fill in the gaps” when she can’t be there.
She also notes that her house isn’t always perfect, and sometimes they eat dinner on paper plates.
“The truth is … none of us can do it all,” she says. “We all have to make choices about what has to go. For me, it’s the illusion of control.”
With their 15-passenger van loaded with kids and bicycles, the Gore family often spends weekends at the park with Beth or Dan pushing Manny in his Kid Kart while the others ride their bikes alongside. They also love going to the zoo, the beach and the occasional trip to Busch Gardens in Tampa. Swimming in their swimming pool and going to church events are other activities they enjoy together.
“I think a key thing for Manny is that we treat him like we would any child and just adapt the activity as necessary for him,” Beth said. “And a child who is fully participating in life will develop skills quickly.”
MDA activities also provide plenty of family fun for the Gore family, who participated in last year’s MDA Muscle Walk in Tampa. Last June, they visited MDA summer camp in Brandon, where they could talk to campers and counselors, and play camp games.
“Manny got to see all the other kids in wheelchairs having fun, and that was amazing for him to see,” she says.
Spending time as a family has benefited the children in so many ways. With four different races and a variety of disabilities and medical issues between them, the Gore children are comfortable in any situation.
“We invest a lot of time to ensure that they see what really matters in life,” says Beth. “So, instead of wanting the latest video game, they understand health issues, and they understand what matters in life a lot better than a typical kid does.”
Written by Beth and released on his third birthday in June, Mighty Manny is a photographic children’s book about Manny’s life with congenital muscular dystrophy.
Beth wrote the book to educate children and adults about this severe form of muscular dystrophy and show them what daily life is like for children with the disease. She had written a similar book when her daughter, Zoe, was bullied at school because she has a cleft lip and palate, and had distributed it to classrooms to promote awareness. Through photographs showing Manny having fun with other kids, the book points out that Manny is “just a regular kid” and “not just a kid in a wheelchair.”
While visiting MDA summer camp in June, the Gores gave the campers and counselors copies of Mighty Manny. The goal is to distribute the book to local schools and get local television stations involved so that “we can open up a dialogue about muscular dystrophy,” Beth says.
“The book helps promote understanding and awareness, and I personally believe that through understanding comes acceptance,” Beth says.
Kathy Wechsler is a freelance writer based in Tucson, Ariz., She has Friedreich‘s ataxia.