I have quite a few things to update you on involving my HD.
On Saturday I went to my cousin on my dads side, Kerry sons third birthday. My cousin Pat did the HD pie In the face challenge in order to raise awareness and donations for research for better treatments and a cure. He did this for his 8 aunts and uncles, and cousins who have the HD gene. Patrick then nominated his mother and her two sisters, and his mother, my aunt Mary nominated her 13 grandchildren. At the party, all 13 kids did the challenge. The kids lined up from oldest to youngest,and Pat said a great speech, and then got the oldest grandchild in the face with a pie. One by one the kids got each other- It was the most adorable and funny moment. I was so grateful to be there because it made me truly believe in more treatment and a cure. My heart was full and I was happy. Right before they all did it, and as they were all lined up with their team hope shirts on, my cousin Kerry said what where's Alexandra and hugged me- it was so sweet. I just adored seeing it.
My Aunt Mary, is an HD saint as my mom,Liz and I have called her. It's true- she is gene negative, and her father, 8 sibilings, including my dad, her nieces and nephews, are all gene positive. Mary is a true advocate for all of them and me. She picks me up at least once a week and spends time with me, and is always going to visit her siblings. She refuses to give up until there is a cure. She is also an amazing mother because she has raised all of her kids to be advocates and compassionate. All of her kids, my cousins are doing the same thing for me. I can't thank them enough for al they have done for me. My HD has brought us closer and I would NOT change a thing!! Thank you thank you thank you!
On Sunday I had my first HD youth support group. It was an amazing experience to be surrounded by other youth who simply get you, and your story with out having to go explain. I truly can't wait for our next session. Some others to add to my HD family. I am very grateful :)
On Monday I went and saw my neuro Dr. Frank and my genetic couselor Lauren. I just adore both of them more than they know. I always always feel better after our meeting. I feel infinite like together we can accomplish any thing- especially kicking HD in the but! I had a few issues I wanted to discuss him; my movements getting worse, my speech- I can tend to slurr my words, and my swallowing. He had answers for all my issues, he suggested a new medicine for the movements, and to see a speech therapist for my speech and swallowing.
It was a HD packed few days, and I loved nothing more. All of these things are key factors in my HD journey, staying happy despite HD, raising awareness, and finding a cure.
Help for today, and hope for tomorrow