A selfless team of wonderful friends, and friends of friends and I are aiming to raise as much money as possible to help those affected by Dravet syndrome and support the work of this incredible charity by running the Ragnar Road Michigan.
For those of you who don’t already know, my amazing 13-year-old son, Armando, lives with Dravet syndrome which is a rare, catastrophic, lifelong, neurological condition that manifests as a chronic form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. Constant watch and care is required as seizures must be acted on quickly, and the quality of life for the person with Dravet as well as the family is severely impacted. Most people with Dravet syndrome remain dependent on caregivers for life. Issues associated with Dravet syndrome include:
- Prolonged/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
- a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy)
To raise some much needed funding for this charity, we have decided to run the 200 mile Ragnar Road Michigan (Muskegon, MI to Traverse City, MI; September 23-24, 2022)-- a team relay race of 24 runners runs the 200-ish miles relay style from the start to end. Ragnar are overnight running relay races that take on average 24-36 hours to complete. Most runners will have at least one run that’s at night, in the dark. The race is divided into 36 sections (called legs). We tag team it. Runner one will run the first leg and we meet them at the first exchange point in the van. Then, Runner 2 will take over, and so-o n-so-forth until everyone has run three legs.
Our team of fundraisers taking on this epic challenge are:
On behalf of Armando's family, we would like to say a HUGE thank you to all our team members taking part in the fundraiser. Please give as much as you can and thank you for reading our story.
The Ordaz Family