Write a commentHarper Rodrigues is a young child afflicted with Dravet Syndrome. In support of his fight against this disease, and to recognize June as Dravet Syndrome Awareness Month, a drive-by parade is planned for June 26th in Oswego.
The meeting spot will be at Fitzhugh Park Elementary school parking lot at 2:45 PM. You can support Harper in his fight by wearing purple and dressing your cars up in purple on June 26th. Let's light up Oswego purple and spread awareness to our local fighter.
Here is Harper's story:
Harper Rodrigues was born on January 18, 2019, strong and healthy. For the first 6 months of Harper's life, he lived it as strong and as beautiful as any other infant would. He played, laughed, cooed and rolled all over. On August 10th 2019 our lives changed as our family was headed to a birthday party in Albany NY. Our morning started off as any other morning would. Harper played in the bath, got dressed and ready for the day, ate bananas (his favorite) and played. Later that morning we packed up and headed out. We were on the thruway just about to Little Falls NY when Harper let out a strange cry that alarmed his Mamma, who was sitting in the back seat with him. When Mamma looked over at Harper, he was visibly in a seizure. We quickly pulled over to the side of the road. Erica, Harper's Mamma, quickly unwrapped him and handed him over to his Mommy, Ali. Harper was lifeless. We were almost shockingly clueless as to what was going on. Mommy started CPR. A man in a red truck stopped and took Harper; he showed us mommies that he is a volunteer firefighter. It didn't take long before paramedics showed up but in that moment it felt like hours. Harper was rushed out to Albany. The team of doctors in Albany told us that Harper may have spiked a high temperature in the car and that may have cause the seizure. We were told Harper may never have another seizure and we were able to go home. Fast forward a month later, Harper had another seizure but this time he had more than one. He had seven! That day started our journey with the team of Doctor's, nurses, Neurologist and more at Galisano Children's Hospital. Harper started undergoing many test. Harper had many EEG's that didn't give us any answers right away. By November of 2019, the three of us were living our lives in the hospital. Harper's neurologist had him get genetic testing done. We had many moments with many scares that Harper wouldn't make it home with us. On December 24th, 2019, Harper's genetic testing came back. A neurologist walked into our hospital room with a packet. The stack of papers we saw, we just knew it wasnt good news. This day started a whole new journey. This day our son was diagnosed with many genetic deletions. All of what leads to him having epilepsy. Most importantly Dravet Syndrome.
What is Dravet Syndrome?
Dravet Syndrome is a rare form of intractable epilepsy that begins in infancy and proceeds with accumulating morbidity that significantly impacts individuals throughout their lifetime. Dravet Syndrome has an estimated incidence rate of 1:15,700 individuals. While seizures persist, other comorbidities such as developmental delay and abnormal EEGs are often not evident until the second or third year of life. Current treatment options are limited, and the constant care required for someone suffering from Dravet Syndrome can severely impact the patient’s and the family’s quality of life. Common issues associated with Dravet Syndrome include: Prolonged, seizures, frequent seizures, behavioral and developmental delays, movement and balance issues, orthopedic conditions, delayed language and speech issues, growth and nutrition issues, sleeping difficulties, chronic infections, sensory integration disorders, dysautonomia, or disruptions of the autonomic nervous system which can lead to difficulty regulating body temperature, heart rate, blood pressure, and other issues.
In the almost two years that Harper has been diagnosed he has had thousands of seizures. He has had CPR performed multiple times. He fights through all therapies. He has met with many different Doctors and has had more hospital visits and admissions than an average child. Harper, friends, family, Doctor's, nurses, therapist and more fight everyday for him. We have grown to be strong. We have shown Harper what #Harperstrong means.
