Imagine discovering a family whose very essence is turning life’s challenges with CMT into remarkable triumphs. That's exactly what we experienced in our latest CMT 4 Me episode. We had the privilege of meeting with the Coldirons, an extraordinary family. One of their daughters (Hazel) has been bravely facing CMT since she was three years old. As we shared space with the Coldirons, their remarkable unity and love profoundly moved us. Their journey is more than confronting the intricacies of CMT. It's a story of transforming adversity into hope, of turning every struggle into a step towards empowerment and advocacy.
The Coldiron family stands as a pivotal part of the CMT community. David, who lends his voice and insight as a board member of the Charcot-Marie-Tooth Association (CMTA), and Christina, known for her passionate advocacy, are parents to Hazel, a nearly 11-year-old bravely navigating life with CMT. Their hallmark contribution is the Coldiron Derby, an innovative fundraiser that has become a yearly highlight. This event is not just about raising funds for CMT research; it's a gathering that unites the community, promoting awareness and solidarity. Through the Derby and their ongoing commitment, the Coldirons make a tangible impact. Their efforts extend beyond their personal challenges with CMT, serving as a powerful example of how community engagement and dedication can create meaningful change.
Hazel's journey with CMT began when she was just three years old, a moment that marked a new chapter for the Coldiron family. Receiving a diagnosis at such a young age presented its own set of challenges. Initially, it was a path filled with uncertainty and questions. The Coldirons, however, faced this new reality with determination and a commitment to understanding and managing this unknown challenge
Navigating the healthcare system was not a straightforward journey. They encountered complexities and obstacles along the way, but their resolve never wavered. Seeking out the best treatments and support, they became advocates not just for Hazel, but for others in the CMT community facing similar hurdles. Hazel shows remarkable strength, With her family's unwavering support, she has learned to thrive in her circumstances.
David and Christina Coldiron’s approach to parenting Hazel, who lives with Charcot-Marie-Tooth disease, is marked by both resilience and proactive engagement. When initially faced with Hazel's diagnosis, David shared, 'We were very confused... it was a little scary at that time.' The couple decided to 'start figuring out how we can make a difference' and ensure Hazel had access to the best possible care.
Christina's philosophy is empowering and straightforward: 'If Hazel wants to do something, we'll find a way to make it happen.' David echoes this sentiment, emphasizing that 'CMT should not be a limiting factor in life' and underscoring the importance of not treating their children differently because of CMT. David’s involvement with the CMTA board is driven by a desire to be actively involved and make positive changes. This mindset of active engagement and refusal to let CMT define their lives shapes not just their parenting but also their broader advocacy work, making them invaluable members of the CMT community.
The Coldiron family's commitment to the Charcot-Marie-Tooth Association (CMTA) goes beyond personal interest; it's a testament to their dedication to the broader CMT community. David's role on the CMTA board and Christina's active participation in community initiatives are pivotal in their efforts to elevate awareness and support for those living with CMT. They are not just participants but catalysts for change, working tirelessly to advocate for research, resources, and community engagement.
One of their standout contributions is the organization of the Kentucky Derby part which they call the “Coldiron Derby”, an event that has become synonymous with fun, fellowship, and fundraising in the CMT community. This annual gathering isn't just a celebration; it's a powerful tool for raising awareness and funds crucial for CMT research and support. The Coldirons' ability to bring people together for a cause so close to their hearts exemplifies their influence and the positive impact they have within the CMT community. Their efforts underscore the power of community involvement in driving meaningful change and fostering a sense of solidarity among those affected by CMT.
Hazel Coldiron, though young, carries a wisdom that belies her years, especially when discussing living with CMT. Her outlook is encapsulated in her own words: 'Don’t let having CMT limit you because like if it limits you and you think that it’s a problem then it’s definitely going to make other people think that too'. This powerful statement reflects her belief in overcoming perceived limitations and influencing how others view her condition.
Hazel emphasizes the importance of self-respect in facing CMT, stating, 'You have to have a lot of self-respect. Because like yeah there are tons of other people who have CMT but it’s not all the same'. She understands that respecting oneself, both inside and out, is crucial, regardless of having CMT. She further elaborates, 'Respecting yourself and who you are on the outside and mostly the inside... is more important than whether you have CMT or not'.
Driven by her positive attitude and determination, Hazel dreams of becoming an anesthesiologist, a goal that highlights her desire to give back and contribute meaningfully to society. Her perspective is not just advice for others with CMT, but a guiding light for anyone facing challenges, proving that limitations are often just a state of mind.
The Coldiron family's story reminds us of the grit and togetherness within the CMT community. From Hazel's inspiring determination to not let CMT stop her, to David and Christina rolling up their sleeves to advocate and connect with others, this family shows us that we can overcome challenges with grace and optimism. Their work, especially through fun events like the Coldiron Derby, has put CMT on the map while bringing folks together.
We hope you listen to the full podcast episode for more of their outlook and experiences. Their perspectives offer lessons for all of us, with or without CMT. Let's celebrate their journey and join a community built on hope, friendship, and making each day matter. Tune into 'CMT 4 Me' for more uplifting stories, and let's keep strengthening this network of empowerment within the CMT community.
