Date/Time
Date(s) - 05/10/2025
10:00 am - 1:00 pm
Location
Perry High School
Perry High School- May 10th, 10am
2 families within our Perry community are currently living a life with Tuberous Sclerosis Complex (TSC) and they need your support! One family is the Arcaro’s – lifelong Perry residents and alumni, Michael & Ally’s youngest son Noah was diagnosed in 2024 at 6 months old. The other family is the Darnell family. Mrs. Aimee Darnell has been a teacher in Perry Schools for many years. Her oldest daughter Peyton was diagnosed before being born. TSC is a condition where tubers form in a person’s vital organs and for Noah, his are in his brain and kidneys.
In 2024, Noah was diagnosed with TSC and Epilepsy. In May of 2024, when Noah was only 5 months old, Michael and Ally noticed him making strange eye & limb movements – they immediately took him to neurology where they found out, after MANY tests, that he was showing signs of infantile spasms (a rare type of seizures in babies – often an early indicator of TSC) and it was confirmed that he had TSC, a currently incurable condition. While everyone’s journey with TSC is very different, Noah’s has had what his family would call a mild to moderate case of it.
Peyton was diagnosed with TSC while in utero. Mrs. Darnell’s doctors let her know while she was still pregnant with Peyton that they suspected she had TSC from shadows on her heart and once Peyton was born, she was whisked away by a team of doctors where they confirmed what was already told to them. Since her birth, Peyton’s TSC mostly affects her heart. She has also had some tumors grow on her skin where she was able to get some medications to help reduce the size of them. Both Peyton and Noah also have what are called ash leaf spots on their skin, which is also an outward indicator of TSC. It is where the pigment in their skin doesn’t and won’t show, and leave white patches.
This walk is not just for Noah or Peyton, but is for everyone affected with TSC. The families are hoping to raise awareness and get community involvement in the walk – a 1 mile or 3 mile option is available! It is through this involvement that we hope to raise some money for children and others affected with TSC, just like Peyton and Noah, so that maybe one day, in their time, we will find a cure. Join us! May 10th! At Perry High School! Please feel free to reach out to me for any questions! Please feel free to join either of our teams, Noah’s Happy Feet or Peyton’s Positive Peeps, with the QR code below.
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