On March 24, Gene Veritas posted “The precious participation of the Huntington’s disease community in the quest for treatments: a report on the 2015 HD Therapeutics Conference” in which he stated that “the need for clinical trial volunteers will increase dramatically as the number of trials grows rapidly.”
Kasci Brantley wants to be the first in line for those trials. Because, the truth is that she will do anything to save her children. “My biggest fear is that my children could possibly have this. I couldn’t get past that fear long enough to fear for myself. I still can’t.”
Many people grow up with HD already affecting their lives, but not Kasci. The 27-year-old Kentucky native was blindsided by the news that she was at risk for HD.
“My biological father knew he was at risk his whole life because he watched his family members suffer through HD,” she said. “He never told me about it, so it was a total shock in July 2013 when my biological sister messaged me on Facebook and told me that he had gotten tested and he tested positive.”
All she knew about HD was from hearing it about it on a few medical TV shows, but after she heard this news, “My entire life changed so fast and so drastically in just a split second. I googled HD and read everything I could find about it.”
Maternal instinct personified
Kasci is able to verbalize with passion and resonance how most parents feel about possibly passing on HD to their children. “I am so afraid of them possibly having it that it consumes my every thought and every nightmare. I can barely force myself to function knowing that there is nothing I can do to protect them at this point. I’m not going down without a fight.”
Kasci encountered many irregularities in the process of testing, but faced them all bravely.
The first challenge came when, after drawing her blood, a primary doctor called later that day and told her he was not going to send it off because he didn’t feel comfortable doing it. Eventually, the doctor that cared for her father reached out and offered to perform the test for her.
Next, she showed incredible strength by receiving her test results over the phone, with no one there to support her.
Standard protocol for giving HD genetic test results recommends that the at-risk person come in to a clinical setting with a family support member to receive the results, whether they are negative or positive.
Perhaps not knowing this, or without thinking of the consequences, Kasci’s doctor told her that his office would call her and tell her over the phone if the test was negative and if the test came back positive, they would ask her to come in so they could tell her. (!)
“I had stared at my phone screen for two straight weeks willing it to ring. It was agony not knowing. Finally, it rang. I answered and the sweet front desk lady said that she hated to make that call and asked me if I remembered him telling me that I would have to come in. I said yes. She was in tears and she told me she was so sorry.”
So she found out that she was gene positive for HD without any support, and then drove without a support person to the doctor’s office to “officially find out.” She doesn’t seem to harbor any hard feelings, perhaps because they agreed to test her and they were very kind to her.
Ready for the front lines
Today, in addition to enjoying her family, she devotes her attention and energy towards trying to participate in research. Kasci’s dream is to participate in finding a cure for HD.
“I am determined to do absolutely everything I possibly can to fight HD and find a cure so that when the time comes to tell my sweet little children about this, I will be able to tell them that there is no need to worry because there was a cure found.
“That is my dream. It is the only ray of hope that I have left and I’m clinging to it for dear life. I’m supposed to protect them from harm and it breaks my heart that I can’t protect them from HD.”
Kasci aims to participate in any and all research she can. So far, she I has participated in Predict HD. “My husband and I flew to Iowa every 6 months for 4 days. During this time, I went through cognitive testing, behavioral testing, physical exams, psychological exams, MRI, Pet Scan, urine tests, spit testing (super gross and I never understood that one), 10 tubes of blood drawn each time, and a spinal tap.”
Kasci has attempted to enroll in experiments, trials and research groups ever since, with no success. “No one ever gets back in touch with me.”
A glass half full
When learning about the first ever Huntington’s Disease Center in Houston, TX, in which doctors lead Huntington’s disease research, trials, and experiments. Just last week, Kasci’s family moved a 13 hour drive from the home they knew to Houston to facilitate her participation in those programs.
After unpacking the last box, Kasci called the Huntington’s Disease Center, and was greeted by someone from the Parkinson’s Center who informed her that the HD Center had just been shuttered and none of those doctors remained.
While other people (like me) would be pulling their hair out at this point, Kasci sees a silver lining in the Houston move. “Moving here opened up so many doors for me. There is a HDSA location here. There are support groups here for HD. There is an Enroll HD location here that I have been trying for days to get through to.”
“Fighting for my kids”
“I can’t sit back knowing that these trials and experiments could save their lives one day and so much amazing research never goes to market because they couldn’t get enough participants in the human trial phase’ Kasci says, “I am willing to be a participant in any trial or experiment. I’m 100% serious about this and dedicated to finding a cure. If there is something I can enroll in, I pray that someone would inform me of it so that I can. “
So if you have a lead on research, studies, registries, or trials, send it Kasci’s way.
“I’m just hell bent on not going down without a fight. I am not fighting for my own life. I am fighting for my children and my future grandchildren and their children and so on. I will never give up. I want my info out there and available for researchers to contact me. I’ll go anywhere and participate in anything. My email address is firstname.lastname@example.org “.”