“To me, as a mother, you have to do everything in your power for your children. Every child should feel like their mother will do whatever they can for them. I feel as a mother I have a major obligation to the children I brought into this world.” —Jennifer Lewis, mother
Jennifer Lewis believes in living life to the fullest. She has traveled the world, skydived and stayed in the jungles of Belize. She has spearfished, indulged in girls weekends, and attended every concert, art exhibit and fundraiser she could squeeze into her bulging schedule. For Jennifer, enjoying life is considered an art form and she is Rembrandt. And, at the age of 38, life’s next great adventure presented itself in the form of motherhood. After years of trying, including years of tribulations, Jennifer and her husband welcomed their first son, Greyson, followed some time later by their daughter, London. Then, on March 1, 2017, another blessing entered their world: Rocco.
At 37 weeks of gestation, a beautiful amber-haired Rocco was born, and, from the very beginning, his easygoing nature was evident as he was a challenge to wake up post-delivery. But the Lewises felt luck was on their side as three healthy children made their home complete.
It was not until Rocco was 6 months old that Jennifer recalls feeling something was “not quite right” as Rocco had not yet mastered the milestone of rolling over. Accompanying this was his increasing irritability and his making a crunching motion reminiscent of someone struggling with constipation. Jennifer’s intuition told her otherwise, and she began to suspect that Rocco was having seizures. It would take several trips to the doctor, a few terrifying events of Rocco turning blue and Jennifer’s persistence for them to get a diagnosis: lissencephaly.
Lissencephaly is a rare genetic disorder which results in a brain malformation that greatly effects developing motor skills. Because of this, Rocco will have global and developmental delays and has about a 1 percent chance of walking. It is uncertain if he will be able to speak, feed himself or sit on his own. Most children with lissencephaly die by 2, and many do not live longer than 10. What is known about the disorder is that early intervention and intense therapy are the best things for him, and Rocco’s family was prepared to do all they could to improve his quality of life. Weekly, Rocco receives therapy at Infant Toddler, Children’s Center for the Visually Impaired and Leanne Britton, and has many doctor’s visits. This, along with the demands of everyday life can be exasperating for any family, but Jennifer remains optimistic.
“I want to do right by Rocco but also want my other children to be able to go and experience all the beauty and magic of childhood, so striking that balance is trying,” she says. “I hope Rocco will teach my other children compassion and kindness. He has shown me a bittersweet beauty to life. Rocco has taught me I have to fight for everything and to never quit.”
Although they are not sure what the future may hold for sweet Rocco, Jennifer is thankful for friends, family and the community who have reached out to offer their assistance.
To donate, follow Rocco’s story and for fundraising information, visit Rocco’s Warriors on Facebook or RoccosWarriors.com.