1. What is your name? Holly Matthews2. Where are you from? Redding, CA
3. How old is your child with JHD? 15 years old.
4. How old was your child when they were tested for JHD? 10 years old.
5. How old was your child when they started showing symptoms? Looking back, the first signs were when she was around nine years old.
6. Who did your child inherit JHD from, Mom or Dad? Her Dad.
7. What were the first signs that made you think your child may have JHD? She had always been really social, bubbly, and great in school. So when she started having difficulty in school, lost interest in being social, and her personality seemed too dim, we got worried.
8. Did you notice any sort of changes in school before your child was diagnosed? School had always been really easy for her. She was often in the top 2 students in math and really loved math. Eventually, she told me that she just didn't have a "math brain." It became harder for her to understand the concepts.
9. Did you notice any behavior changes in your child around the time of their diagnosis? She had pulled away from friends in school and didn't have any interest in participating in the social events her friends were participating in.
10. How is your child's behavior now vs. when they were first diagnosed with JHD? She used to be so happy, always singing and dancing! She's much more subdued now...part of that is probably being a teen, but JHD has definitely played a key role in that change as well.
11. Did you know what JHD was before your child was diagnosed? I didn't know about JHD when she was born, but as the years progressed, I researched more about HD, and I had read articles on JHD. It was the scariest thing I could think of, and I was terrified once I read about it.
12. What was the testing process like? Our testing process was a little rough; we first sought testing through our pediatrician. He didn't know much about HD and believed only males could get it. I, of course, knew differently, and he agreed to order a blood test. When I took her to the testing site, they declined to take her blood and told me they could not/would not complete the test for us. We were then referred to a children's neurologist in Sacramento. He saw us and agreed that we should pursue testing. He ordered an EEG and told us that he was 99% sure that she had HD when he saw the results. From there, the blood test was ordered. The lab and the insurance pushed back, resulting in the doctor having multiple conversations with them. Eventually, we got the test. A nurse or receptionist gave me the results over the phone while I was in a conference room at work. I had never heard of a CAG repeat so high, and I was in total shock. It wasn't until a few months later that I was put in contact with the HD Center of Excellence at UC Davis, and I felt like I could breathe again and let them take some control.
13. What professionals helped you and your family through the genetic testing process? We really navigated it alone.
14. What stage of JHD was your child in when they were diagnosed? Very early stages.
15. Does your child have the help she needs at school? We've been really lucky that both her elementary school and now her high school have been really supportive! Our goal is to allow her to attend school and be with the classmates she's been with since kindergarten.
16. Are you part of any support groups? (online or in-person) I'm a member of several HD/JHD groups/pages on social media and have only recently been invited to and attended a JHD mom's virtual private support group. It's nice to know that even though we all have different stories, many of our experiences are the same.
18. How do you explain JHD to people? It's a degenerative neurological disease that affects her brain and motor skills. People mostly still don't understand, so there usually is more discussion after that.
19. What is your biggest struggle as a caregiver for a child with JHD? Balancing the day-to-day parts of life while also trying to take into account what really matters for her...making memories.
20. If you could give any advice to a new caregiver, what would you tell them? Take time for yourself; otherwise, you won't have anything to give to your loved one.