Kennedy is a four-year-old girl who resides in Londonderry, NH with her mom, Shelby, her dad, Patrick and her baby sister, Kerrigan. She loves to spend her time with her baby sister, loves playing with her toys and loves shuffling around in her gait trainer. She is a very happy and joyful little girl who brings smiles to all around her.
We invite you to read more about her story and support Kennedy through a purchase from our shop where every purchase will help buy equipment allowing Kennedy to enjoy family walks and runs. You can also subscribe to our podcast and hear our interview with Kennedy’s parents releasing May 3rd.
“We can go about this two different ways. We can wallow and be negative and keep thinking why us? Or we can just move forward and decide to be rockstar parents she deserves.”
When Shelby was pregnant with Kennedy, there were some red flag markers on the early ultrasounds, but all the tests came back negative so the doctors assured Shelby and Patrick that everything was fine. Later on in the pregnancy they did a blood test for spina bifida, which came back slightly elevated so it was assumed that she did indeed have spina bifida. At 17 weeks Shelby had her anatomy scan for the baby and there was no sign whatsoever of spina bifida so they again assured Shelby and Patrick that everything looked fine. Then, at 26 weeks pregnant they did another ultrasound where they learned of the brain malformations. This led to subsequent testing and a fetal MRI at 28 weeks pregnant. The fetal MRI provided the diagnosis of Bilateral Perisylvian Polymicrogyri (BPP). This is a rare neurological disorder that affects the cerebral cortex.
The doctors informed Shelby and Patrick that Kennedy was considered in the “gray zone”. Shelby shares, “They said we were in a gray zone. She could not be too affected or she could be. In this community you see a wide array of how the kids present.” Shelby shares that every day is a learning curve with Kennedy to figure out what works and how to help her communicate best.
Shortly after Kennedy was born, she had her first seizure; at six-months old she experienced the worst type of pediatric seizures, infantile spasms. She was diagnosed with Epilepsy and recently diagnosed with Cerebral Palsy. Due to these diagnoses Kennedy is non verbal, cannot sit up, crawl, or walk independently. Shelby and Patrick are currently working to see if Kennedy has Cortical Visual Impairment and are looking to confirm tests that have reported mild to severe hearing loss.
Kennedy goes to school three days a week where she receives physical, occupational, and speech therapy services. Outside of school she continues to have doctors appointments and therapy services. Kennedy’s family works hard every day to ensure she is getting the care she needs and that she is happy.
When asking Shelby what her biggest win has been with Kennedy, Shelby immediately beams and shares, “Her personality. She’s the happiest. What more can a parent ask for than to see their kid happy?”
Time to get loud shouters!
Throughout the month of May we will be shouting love for Kennedy and four other kiddos with their own special and unique stories. We hope you will join us in getting to know these five incredible families.