When Debi’s son Zach was first diagnosed with CMT Type 6 in 2014, after 14 years of doctors trying to figure it out, she couldn’t believe there was a disease out there that no one has ever heard of.
How could this be?
After researching on the internet, which didn’t provide a lot of information, her first call was to the Hereditary Neuropathy Foundation, and spoke with HNF’s CEO and Founder Allison Moore. She was the very first person that was able to answer so many questions about CMT that all the doctors could not.
CMT6 is a less common form of Charcot-Marie-Tooth disease. In CMT6, symptoms can start in early childhood, teenage years, or adulthood. CMT6 involves development of optic atrophy with loss of vision or blindness, muscle atrophy and weakness, loss of sensation, and balance and gait difficulties.
Since Zach’s diagnosis in January 2014, The Houliares Family continues to bring awareness to this terrible disease in his community and beyond. Debi joined the HNF board of directors to help raise funds for CMT6 and spread awareness. They have led 3 major fundraisers since his diagnosis.
We’ve invited Debi to join the panel discussion on “The Squeaky Wheel Gets the Grease: The Art of Being a Successful Patient is to Know How to Get on Your Doctor’s Nerves and Feel Good About It.”
Let’s hear more from Debi:
HNF: Why did you choose your particular topic for the Summit?
Debi:
I know what this family went through trying to find answers to the “whys” that so many doctors could not do. CMT has been around for 100 years and yet so many doctors were unable to diagnosis Zach condition. Never give up.
HNF: How has CMT affected your life?
Debi:
Since Zach’s diagnosis in 2014 life had forever changed. Just knowing that Zach may not able to walk one day, lose the use of his hands, and may be completely blind is not acceptable. I have made it my life’s mission to continue to raise awareness and money for research.
HNF: What do you hope attendees take away from the Summit?
Debi:
I hope that everyone attending the conference realizes that research is happening. People are working hard to find treatments and a cure for this disease. I want everyone to realize how important it is to bring this information back to their own communities and help in this fight to raise awareness.
HNF: Anything else you’d like to share with the community?
Debi:
Never give up! HNF has many resources, so use them. We are creating a place where people can go to help find support.
Connect with Debi and learn more about her mission to raise awareness and find a cure for CMT6 here:
Facebook: Team Zach
Currently creating a closed FaceBook page for the CMT6 community.
It is so difficult when you have to explain to the doctors and nurses what CMT6 is, why your feet turn in the way they do, why you are legally blind, why you are always in pain, etc… The list goes on and on. Sometimes it feels like I am teaching a class instead of getting the help that I need. This is just one little part of living with CMT6. I really want to help in this battle against CMT6 because I don’t want my children or grandchildren to experience the heartaches and difficulties that I have faced and will continue to face because of it. I try to have a positive attitude so that my sons won’t dwell on the “what ifs”. I know that I am a child of God and that some day I will be with Him in Heaven, and I’ll have a new body and eyes that can see everything!! So i just want to tell you that I appreciate everything you are doing to help with raising awareness of this disease and raise money for research. I want to help!! Please tell me what I need to do to help HNF in this fight against CMT6.
Maria,
Thank you for your post and help with the fight against CMT6.