Chapter 1: Our Story Begins
Hey everyone. Life is a wild ride. Let me just start with that. Since Joe and I met in 2011, he has played for 6 teams, we have lived in 14 cities, and I have traveled on average everyone 2-3 days for my job as a reporter and studio host. It has been a dream to both fulfill our aspirations of prospering in our respective professions. It truly has been a dream come true. Somehow though, through all of the glitz and glamour, we had a dark cloud over our heads. That dark cloud was Huntington’s Disease.
It’s still there, don’t get me wrong. Along with the dark cloud was emptiness. Despite all of the traveling and success we were having, Joes mom Lee was in and out of the hospital, full-time care facilities, and emergency rooms. Joe’s dad was overwhelmed with all of the decisions and mood swings and outbursts. And Joe’s sister moved her entire family back near Ohio to be there for Lee. And here we were traveling all over the country living our best life. Guilt and sadness were the main feelings Joe was experiencing. When he talks to his mom every day, he is constantly reminded of the suffering and life-robbing disease that not only his mom is going through, but that he could be going through soon. It’s not pretty.
That is when we stumbled on the biggest blessing of our lives. PGD-IVF. When we first found out we could have a baby “HD FREE,” it was 2015. We were blown away and decided this route was for us. It wasn’t an easy decision though. Joe convinced himself he would get tested to save me the burden of going through weeks of shots and surgery. Then he would decide that he wasn’t ready to get tested, and we would convince ourselves PGD-IVF was the answer. This cycle repeated for two years. It was exhausting and emotional. It was necessary, but not easy.
Once we decided we were taking the PGD-IVF route for sure, we were SHOCKED at the cost. We would walk out of the doctor’s office at the fertility clinic and be asked “how would you like to pay for the $8,000 today?” I mean $8,000 on the spot??? Are you kidding me?? That didn’t include the drugs or genetic testing or lab work or anything. We were SO grateful we could afford it, but our hearts sunk thinking about the people at risk for HD that could NOT. That is when we decided to give every single penny we raised to pay for PGD-IVF for families. That is a cure in our minds. A cure for future generations. Eliminating HD from family lines forever.
We have found hope and purpose, in HelpCureHD. We have found hope and purpose in knowing that we can eliminate this from our family line forever. We have found hope and purpose in knowing we can help OTHER families eliminate this from their family line forever, as well. I will be posting on this page frequently, chronicling our personal journey through PGD-IVF, as honest and transparent as possible. We have been through it once, and none of the embryos made it to full maturation. We are now on round 2! I will post a round one recap next, then fill you in on our current journey! You are not alone. And there is hope.
