183 - "Don't Give up the Hope" with Jamie Pendleton
I met Jamie Pendleton through my husband. She was looking for a coach to give her structure and confidence for a huge running goal - to break 3 hours at the New York Marathon. At that time I just thought she was a driven athlete who needed accountability like most of Tim's clients. Boy was I wrong.
Jamie runs for so much more than the goals and structure. She runs for her sanity. She runs for stress relief. She runs for her daughter.
Miren was born with a rare disease that affects pretty much every function in her body. The problem is that it took 6 years for them to get an actual diagnosis. During that brutal time of uncertainty, Jamie's marriage fell apart, she battled depression and suicidal thoughts, felt shame and guilt, and wondered how she could ever find a cure to save her daughter.
CACNA1A affects Miren's body’s ability to use calcium and wreaks havoc on her neurological system making it challenging for her to speak, think, and move like her peers. Children with this disorder present much differently but all express neurological symptoms which include: seizures, episodic ataxia, hypotonia, eye abnormalities, intellectual disability, and cerebellar atrophy.
Jamie's mission is to raise money to find a cure for Miren. This means coming out of her shell, leaving her introverted comfort zone and DOING EVERYTHING SHE CAN TO ADVOCATE FOR HER DAUGHTER.
Unfortunately rare diseases are not prioritized by the medical community for that reason - they're rare. But there's a good chance that a drug has already been discovered that can treat Miren's disorder, so the first step is to raise $250k to run tests for a match. I encourage you to donate if it calls to you. And please forward this episode to anyone you think would benefit from learning more about Miren's Marathon.
Some notable quotes from today's interview:
About running: "I wanted to preserve something that was genuinely part of myself."
About tattoos: "I asked the tattoo artist, 'Where is most painful part of your body for a tattoo?'"
"You can only experience true beauty when you're on the the other side of suffering."
The 6th stage of grief: "This is when everyone can find meaning in their suffering."
At the end of the day, one mom can make a difference. One motivated person can change the world. Thanks, Jamie, for sharing your story with me.
To Donate: Go to Rare Village. This year, donations up to $300 can be refunded as a credit on your taxes!
More info here:
Tax ID # 83-4699994, Address: 6808 Old Glory Ct, McKinney, TX, 75071, Email: firstname.lastname@example.org
Participate in a 5K Fundraiser: Mark your calendars Feb 28, 2021
Jamie & team will host a virtual 5K on Rare Disease Day - Sunday February 28th called Zebra race for Rare. Registration is available on the Rare Village Website.