How Two Couples Persevere for a Family Despite Uncertainties Surrounding HD
Being gene-positive for HD can change everything about a life and relationship, and this is profoundly felt when deciding to start a family. For two married couples, Josh and Brianna, and Justin and Chauntay, the decision to have a child was investigated with careful intent. With considerations such as life span, quality of life, likelihood of passing down the HD gene and full understanding of the situation by both partners, the stories of these individuals demonstrate the decisiveness and resilience required to make the right call and see the process through.
Brianna’s Diagnosis
It came as no sudden surprise to Brianna when her genetic test reported a CAG repeat of 42. Although HD was often swept under the rug in her family life, the presence of the disease was undeniable. Both her uncle and grandfather had passed away from HD and her mother, still living, has it too. From “Bri’s Blog,” documenting her journey, she writes about gettingthe news:
“While that might not mean much to someone who isn’t familiar with HD, for those in-the-know, it means that at some point in the future, I will definitely develop the symptoms of HD and will, in time, pass away from its (currently) inevitable complications. HD is a neurodegenerative disease that takes away motor skills and greatly impacts mood and expression. My mom started experiencing symptoms in her 50’s, which is honestly pretty late onset for many HD folks. She gets herself dressed and does simple chores. It may not sound like much, but to an HD patient, those little things can be everything. If I take after her late onset, I’d be grateful.”
Although the results were obviously not what she was hoping for, Brianna found a sense of empowerment and relief upon finding out her gene status. It gave her the freedom to plan for the future without the additional burden of “what if” scenarios. This especially gave her insight to help her decide if and how she wanted to start a family.
A Tough Call
After meeting through a dating app, Josh and Brianna quickly knew that they had found something special.
“I was actually an hour late to our first date,” Josh said. “I had decided to take the metro because I thought it would be quicker, and it caught fire while I was inside it. At least it was a legitimate excuse. I was texting her the whole time, apologizing and saying I would come. Normally, both of us would have given up or rescheduled, but it felt different from the start. I’m glad I pushed on.”
“That kind of bleeds over into the HD situation. We’re both each other’s rocks, so her HD diagnosis didn’t affect how I felt about her at all. It didn’t change my decision to be with her, because I viewed her as my life partner. It was just a data point for me, bringing up questions relating to life insurance and having children.”
Josh and Brianna eventually did decide they wanted to start a family and, after Bri found out she was gene-positive, she was set on either adoption or in vitro fertilization (IVF). Josh was more willing to roll the dice, considering the advancements in CRISPR and his own research into the likelihood of the gene passing on, but Bri was firm in her stance. She really wanted a baby that was genetically theirs, and after investigating the IVF treatment through HelpCureHD, they were approved.
“The IVF ‘green room’ was available to us, so I wasn’t going to go against her wishes. Her body, her choice. Honestly, we were very lucky. We got a grant, got 18 eggs from the initial pull, of which three were HD-free. The artificial insemination took on the first try,” Josh said.
Augustus Franklin Myers, 8 months old, is currently the thriving, HD-free light of Josh and Bri’s life. They recently reached out again to apply for a second grant.
Justin’s Story
Currently a high school teacher and theater program director, Justin recalls the first time he heard the word Huntington, when he was just shy of ten years old. He was overhearing a conversation between his mother and grandfather, where she was explaining that Justin’s father had Huntington’s.
“They had gotten tested and I remember not knowing what it was or what It meant. I didn’t want to make my mom feel worse, so I never brought it up to her. So around the age of thirteen, we had just gotten the internet. Huntington’s was the first thing I looked up. I was reading the symptoms and it was like bam, bam, bam, that sounds exactly like my dad. He checked all the boxes for stage one, and then I read about stage two and three and started to see how he would develop,” Justin said.
As Justin continued to learn more about Huntington’s, he had a growing interest in getting himself tested. He wanted to be able to plan accordingly for his future family. After finding out he was gene-positive at the age of 20, and seeing a neurologist, Justin knew he did not want to have a child with HD.
In the summer after tenth grade, Justin had begun his first real relationship, one that would end up in marriage. He was vocal about his decision not to have a child and his partner was supportive at the time, but after an accidental pregnancy when early IVF attempts were unsuccessful, her stance started to shift.
“I didn’t want to have to convince her, but I did the best I could to explain my feelings about not wanting to pass down HD. I lost that battle, and so we brought a child into the world at risk for HD. I worry all the time about the future for my son, and I hope that the leaps and bounds they have made in the research come to fruition,” Justin said.
Around the time when his son, Ryder, was 4 years old, Justin’s marriage became strained. They ended up divorcing, leaving Justin questioning whether or not he would find love again, given his HD diagnosis.
Chauntay is All In
This fear proved unjustified when vivacious, smiling Chauntay came into his life.
“My HD diagnosis is something I always want to be fully transparent about it. I remember we were at a pizza place when I told Chauntay and she said, ‘Oh yeah, yeah, I know about Huntington’s.’ She was the first person I dated who knew about the disease, her major in college being in neuroscience. At that moment I knew I would really be putting my efforts into this relationship. She just made sense to me,” Justin said.
Chauntay and Justin decided they wanted a baby, and they firmly decided on IVF. The process was a bit shaky, with three unsuccessful attempts over four years, but after the heartache, they finally found success. They welcomed Reyven Reynolds into the world, also with HelpCureHD to thank for funding the IVF treatment.
Finding Joy
Being positive for HD means the traditional ways of planning for the future and for family change drastically. In the midst of crisis, however, the joys of life can become apparent. For Brianna and Joshua, going forward with joy has helped them persevere. From Bri’s blog:
“Negative self-talk takes on a life of its own. It spirals beyond logic until eventually, it’s just easier to keep your head down. We lose out on what might have been, if we’d only taken the chance. I have a lifetime of negative self-talk working against me. It’s something I’m working on, and I bet there are a few others out there, too, who can relate. So, as difficult as it may be to remain vulnerable, we cannot close ourselves off.”
Justin weighs in with his feelings about his diagnosis:
“Life can suck, you know, whether you have HD or don’t. There are moments where it gets hard and you get down, but there are still other moments of pure joy. I haven’t given up on anything, I’ve found so many connections with the HD community. People know you, we all have something that connects us. In the HD community, the stories can be vastly different, but at the same time there are so many similarities. There is this reassuring sense that we are all linked.
Considering all the advocacy and engagement within the research community, Justin, Chauntay, Josh and Brianna all have hopes for progress to come in treating and preventing HD. In the meantime, they will soon have healthy toddlers to chase!•