What is your name? Laurel
Where are you from? Spearfish SD
How old is the child you know with JHD? 15
How long have you known them? Since she was 1, little blond baby carrying around her baby doll and gazing up with her beautiful big blue eyes.
What is your relationship to the child? I am the mother to her cousins, and I feel blessed every day to be a part of her family.
About how long ago was it when the child started showing symptoms of JHD?
What were the first symptoms that you noticed? What I had first noticed was a change in her speech.
Did you/do you know the child's parent with HD/JHD? Yes, I knew her father, Justin, and I am thankful for all the memories my son and I got with him. Some of my fondest hobbies are visiting him, playing bingo, and making silly Snapchats with him.
What is your relationship with the JHD child like now VS before they started showing symptoms? I miss really talking with her, listening to her tell stories. I know she loves to listen now, though. I absolutely adore hearing her sing when her favorite songs come on.
What sort of things do you enjoy doing when spending time with her? I love to do her hair; it is so incredibly soft and the prettiest blond. She always has me doing a new style that I've never done before, and it has really upped my hair styling game. I love all the little adventures we all go on together and parties in her butterfly house.
What are some of the biggest changes you've seen in the child due to the symptoms of JHD? Her speech and balance.
What is one of the happiest memories you have had with the JHD child so far? I can't even pick just one; there are so many. Autumn was sitting in a shoebox when she was 2, introducing Autumn to her cousin Sebastian for the first time and teaching her how to change a diaper, laying on the grass, and watching the 4th of July fireworks show together, karaoke with her dying eggs and Easter egg hunts in their back yard waking up and making pancakes when we stayed over, watching Frozen and singing the whole movie and then watching Frozen again until we all passed out, snuggling in the hammock, her face when something is gross, playing tag at the pool with her and her cousins.
What is one of the saddest/hardest memories you have so far with the JHD child? When she doesn't want to do something fun because it is hard for her, it breaks my heart anytime this disease gets in the way. But most of the time, she will still go for it, including some pretty good hikes.
Are you an advocate for Juvenile Huntington's Disease? I try to be. We wear our support shirts, and my son even asked to have a purple shoelace, and he tells everyone who compliments them exactly what it is for.
What sort of HD/JHD events/fundraisers have you been a part of? I helped Londen and Autumn with a color run for HD and a lemonade stand during the rally, where we gave out temp tattoos and talked to people about what HD and JHD is. With Londen and Autumn's help, my husband and I are helping to organize a training for our local law enforcement agency.
What is the most rewarding part of being an advocate? Spreading awareness with Autumn and Londen 💙 💜 I really think it helps so many people who have this disease not feel alone in this fight.
What is the biggest thing you would like to see change in the JHD community from your perspective? Awareness and trials to open for kids like Autumn.
How many people have you met in your lifetime who have HD or JHD? Oh gosh, two people close to me and probably a handful of others that Autumn's momma introduced me to. Autumn and her dad being the youngest.
How do you explain JHD to people when they ask? It is a rare, terminal brain disease, like having all the symptoms of ALS, Parkinson's, and Alzheimer's. And it's not fair.
What is something you would like the child with JHD to know? That you are incredible, you always have been. I love watching you grow into the beautiful woman you are. You are my girl, my heart, and I am so happy to be your auntie.
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