A huge smile beamed across the room of our Babygarten library circle, and a gentle soul with blond hair looked up at me. My friend Danielle introduced me to Rosemary, commenting that “she always has the best smile.” She was right. It was one of the brightest smiles that I had ever seen. When she struggled to move her hand or carefully wobble across the room, she smiled; when we sang a silly song, she contagiously giggled. At that time, I didn’t know the leaps and bounds this giddy 2-year old had taken in order to participate in daily activities.
Months later, after meeting her mother, Jessica, and caregiver, Rachel, I learned Rosemary had suffered a perinatal stroke and suffered from seizures. In addition to her physical and cognitive challenges from the stroke, at four months old, Rosemary’s seizures began, and she was diagnosed with a form of epilepsy called Infantile Spasms.
Rosemary’s parents, Richard and Jessica Lee, read more about the disease at home and learned that it needed to be treated early; one third of children with IS have severe intellectual disabilities and another third die within their first three years of life.
After numerous medications and injections, Rosemary and her family found an answer: diet. They were introduced to the Ketogenic diet by dietician, Laura Dority. In just two weeks Rosemary’s seizures had stopped, and she is now back to a regular diet.
A Life-Saving Diet
This high-fat, low-carb diet changes the body’s source of energy from carbohydrates to fats. The “keton” bodies rise to a certain level in the blood stream, and this helps “reset” the body. The “Keto” diet puts the body in a state of Ketosis that can help eliminate the seizures.
After two weeks, Rosemary was cured and able to stop the diet. There can be side effects, and the diet is a difficult more challenging choice as opposed to medications. With this highly specialized medical diet, creativity is key and attention to detail and numbers are a must.
Jessica recalls that this diet is on your mind every minute of the day. Both parents working full-time make it even more challenging. Jessica says, “It is a harder choice, but it can be the right choice.” Keto Hope Foundation and the Lee Family have a goal in mind. They hope to connect families trying this Keto Diet. The Lee family is also launching a Keto Bakery with products meeting the specific 3:1 fats to carbs ratios necessary for the diet.
This monumental breakthrough doesn’t mean Rosemary’s days are a breeze, but it does mean that she has more than a fighting chance, and her world is not marred with injections and medications that ultimately don’t work for many kids with IS. Today, this sweet, spunky, resilient 2 ½ year old is ready for any challenge. Challenges that she will face every day.
A Day in the Life of Rosemary Lee
Her therapy consists of four weekly sessions; two sessions are at MUSC and two sessions at home. Occupational therapy in the clinic specifically works with her for coordination. Physical Therapy is twice a week at the house assisting her with walking, using stairs, and safely moving in her environment. Speech Therapy is also at MUSC which helps with overall language development.
Rachel says that RoRo has a different kind of challenge than a typically developing kid. She has learned how to compensate and adapt to her environment. This routine has become their normalcy. It is just an average week, but when RoRo tackles a new challenge, it is all the sweeter. Jessica, Richard, RoRo, and her little brother Ben (almost 6 months old) are all smiles, rockin’ and rollin’ on a beautiful, learning, growing adventure.
Rosemary’s toddler buddies and their moms have no concept of the morning routine or perseverance it might take to get out of bed and get down the stairs, but one day I hope they do. I hope my daughter and other kids see the bright smile that shines despite adversity. I hope they see the brave girl that falls and gets right back up and tries new things that make her nervous. I hope they can learn from her admirable determination.
Rosemary’s tenacious spirit you will not forget. She is a tiny miracle that went from fearfully pushing her toes in the sand to giggling with joy as she plays in the surf with her pals. She lives each day with a smile on her face, as we all should strive to do.
“A true warrior is someone who never gives up even when the odds are not in his or her favor. A true warrior is ready to get the job done at the moment of truth with courage, heart and will power.” These words I would share with my former track and cross country teams preparing for battle. As their coach, I wanted them to fight for something beyond themselves and break barriers that they once believed impossible. I am proud to say that I now know a living example of that quote. There is not just one courageous battle being fought, but there is the Lee’s life filled with heart and will power that encompass what it means to be a true warrior. Courage, heart and will power are those special qualities that Rosemary, her family and caregivers possess that inspire us all.
What can you do? HELP SPREAD THE WORD!
Like KETO HOPE on Facebook
Help others connect with the Keto diet that helped Rosemary eliminate her epilepsy.
Donate: Support the Keto bakery that will help other families with this highly specialized diet.