Groveland Twp.- Tiffany Topie knew something was wrong.
Her son Geno was just 5-weeks-old and couldn’t keep food down. The baby was spitting up, vomiting and even went a week without eating. Doctors told her and husband Matt it was acid reflux. They prescribed several different medications for the Topies? son and recommended a formula change. They ran more tests and still said nothing was wrong. The hospital kept Geno until he ate, but refused to perform neurological tests. Around Christmas, when Geno was 7-months-old, his parents and other family members noticed that his left hand was always fisted and he didn’t use it. They visited a neurologist and finally got the answers they sought in January from doctors at the University of Michigan Children’s Hospital ? Geno has spastic hemiparesis cerebral palsy on his left side, as well as a brain abnormality, agenesis of the corpus callosum.
‘You have to be the best advocate for your child,? said Tiffany. ‘You have to believe in yourself and go with your instinct.?
Geno and his family, which includes sisters Claire, 6, and Emma, 2, celebrated his first birthday April 27. Less than a week before, they learned he also as a 6q duplication, a rare genetic condition caused by an extra piece of chromosome 6, one of the body’s 46 chromosomes.
Looking at Geno, it is difficult to tell anything is amiss. The bright-eyed little boy is good-sized, with round chubby cheeks. On a recent afternoon, he smiles and laughs as his father holds him. But if you watch him for awhile, you notice his left hand is bandaged and he only reaches for things with his right hand.
Spastic hemiparesis cerebral palsy is typically caused by brain damage that occurred in the womb or during or shortly after birth. Tiffany Topie had a normal pregnancy and delivery.
‘CP affects muscle function,? explains Matt. ‘It’s possible the CP is related to the extra chromosome instead of brain bruising.?
Spastic hemiparesis cerebral palsy impairs the ability ofthe brain to send proper nerve signals to the muscles and ranges in severity. Tiffany and Matt Topie are hopeful that Geno has a mild form, but will not know until he is 3-years-old if he has speech problems, or until he is 6 whether he has intellectual difficulties. Currently, their son is developmentally about where a 6-month-child should be. He can’t crawl or sit up on his own, he has to be placed in a sitting position. Geno can’t use his left arm or bear weight on his left side or point. His fine motor skills are delayed.
‘He’s the happiest baby, he has a great demeanor, but feeding was torture,? said Matt. ‘Take away the bottle and he’s the happiest baby on the planet.?
Making sure Geno has proper nutrition is one of the most difficult challenges the Topies currently face. Any food must be pureed. His size is good, but Tiffany says that is because he gets nine tablespoons of oatmeal for every six ounces of formula.
‘His problem is he doesn’t have age-appropriate nutrition,? she said.
The Topies want to do the best they can for their son and get him into an intensive feeding program at the Helen DeVos Children’s Hospital in Grand Rapids. However, there is a one-year waiting list to get in and they are anxious to get their son the best care as soon as they can. They are considering one of the other dozen or so hospitals in the country where the program is offered.
The Topies have medical insurance through the Waterford School District where they are both employed at Waterford Kettering High School, Matt as a teacher and Tiffany as a counselor (she is currently on leave). However, their medical insurance doesn’t cover several therapies recommended for Geno, nor for genetic testing they would like done including a chromosomal microarray analysis to tell them how severe Geno’s condition is and how it will affect him so they can be more proactive in his treatment.
A ‘Concerts at the Yard? benefit for Geno Topie is planned for 6 p.m., May 7, at Oakland Yard, on M-59 between Crescent Lake and Airport roads. The event features six live bands and a silent auction, bounce houses and food. Cost is $5. For more information, contact Karly Didocha at didock01@wsdmi.org or Cheryl Blades at cherb1123@sbcglobal.net. Checks can also be made payable to the Geno Topie Foundation and sent to Geno Topie Foundation, 6441 Logan, Waterford, MI 48329.
‘We are so grateful to the people putting on the fundraiser,? said Tiffany. ‘It’s all about helping all the kids who have cp and no one is informing them about the resources that are out there. Don’t take no for an answer. If something is wrong, follow your gut.?