May is HD awareness month! 💙
The HDSA motto is family is everything because HD is a genetic disorder that affects families. In my family 8 out of 11 of my Dads siblings have the HD gene that their father also had. Many cousins either have the gene, or are at risk. HD has put a huge weight on my family's shoulders. Even the ones who don't have the gene are affected when they have had to watch their father suffer and now siblings. We would not make it with out each other to lean on the hard days and to us family is everything.
My Grandma, the mother of eight kids with Huntingtons Disease, had a huge burden to handle, and she did it all with grace and faith. At least twice a week she was driving someo one into Boston for HD research, driving to Tewsbury to visit them in the HD Unit. As hard as it has been for my mom and Liz since I have also been diagnosed they can't fathom doing it eight times over. My family was recognized by the HDSA as family of the year and my Grandma was very deserving of that award. My Grandma has passed but her legacy lives on in my Aunt Mary. My Aunt is everyones advocate, she comes andgets me once a week, and my cousins visit. She tells me stories about our family, and we talk about HD research and our hope and faith for a cure. She keeps my faith alive, keeps me smiling, and I could cry thinking about what she means to me. My Aunt and Grandma are without a doubt HD saints.
I would not have gotten through my diagnosis without my mom and sister.My sister has moved her whole life here from Chicago, and she has taken every Friday off of work in the summer to spend time with me. My mom reminds us to keep smiling even when it's hard and pray everyday for a cure. They both have my heart, are my best friends and I am happy when I am with them.
I have been raised to believe family comes first and family is everything and I without a doubt believe in it. When I was beginning to show signs of HD my mom moved us from our home of 15 year Kansas to Boston to be with her family, have them there to support us because family is everything to her, and we needed them to get through it.
As you can see to me family is without a doubt my everything.
If your a blog reader who has been touched by my story and your not sure what you can do.
1.Email me I would love love to hear from you
2. Tell my story to someone and help raise awareness
3. Donate to the HDSA
I have been smitten with sharing my journey in order to raise awareness for HD!
Thanks for reading,
Alex