What is your name? Londen Tabor
Where are you from? Gillette, WY
How old is your child with JHD? Autumn just turned 16.
How old was your child when they were tested for JHD? When she was 11.
How old was your child when they started showing symptoms? Around age 9.
Who did your child inherit JHD from, Mom or Dad? Her Dad, Justin, had HD. He passed away in 2018 at the age of 36.
What were the first signs that made you think your child may have JHD? Behavior and then (very subtle) involuntary hand/finger movements.
Did you notice any sort of changes in school before your child was diagnosed? Her behavior was getting out of hand, and her grades started declining. I also noticed a significant change in her handwriting.
Do you have any other children at risk for HD/JHD? Yes, I have one other child who is at risk. So far, he is not showing any symptoms, so we are hopeful that he did not inherit the gene.
How is your child's behavior now vs. when they were first diagnosed with JHD? Much different. She doesn't have outbursts anymore. The way she talks, walks, and moves are much slower.
Did you know what JHD was before your child was diagnosed? Yes, but I only learned of it about 1 ½ years before she was diagnosed.
What was the testing process like? It was surprisingly easy for us. We had all the professionals and help we needed at the University of Iowa.
What professionals helped you and your family through the genetic testing process? Dr. Nopoulos, Dr. Matthews, and the team at UIHC
What stage of JHD was your child in when they were diagnosed? Early stages
Does your child have the help they need at school? Yes, we are fortunate that the school has listened and accommodated Autumn with everything she needs.
Are you part of any support groups? Yes, I am part of an amazing JHD Caregivers support group online.
How has your child's diagnosis changed your life? Well… it's changed everything about my life. I have three children, and after Autumn was diagnosed with JHD, my focus has been on her. It's been unfair to my other children, but I'm grateful they are understanding and supportive. Since Autumn's diagnosis, not a day has gone by that I don't think, research, advocate, or talk about JHD in some way. My mission in life is to be a voice, an advocate, and a loving mother to my daughter, who doesn't deserve what she's going through. I have to remember that my child still has a life left to be lived, and we're going to give it our all.
How do you explain JHD to people? It's a neurodegenerative brain disease, and its symptoms are like having all of the symptoms of ALS, Parkinson's, and Alzheimer's disease all at the same time. I explain that JHD is an extremely rare form of HD, and it's different from the adult form. Currently, kids under 18 can't be in clinical trials, and JHD progresses up to 5x faster in kids than in adults with the disease.
What is your biggest struggle as a caregiver for a child with JHD? Wishing I could do more to save her or prolong her life. Wishing I could get her into a clinical trial. Wishing I was rich so that I could travel the world with her.
If you could give any advice to a new caregiver, what would you tell them? Live life one day at a time. Try your best not to think of what the future holds for your child. Instead, focus on the time you get to spend with them today and make today the best day you can.
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