Amethyst Nicole Conrad (Ame)
Amethyst Nicole is my 2nd child, born June 4th. Very beautiful and full of energy! She is 5 years younger than her older sister and 5 ½ yrs older than her younger brother. She soon learned to give me as much trouble as she could, and her sister if she was babysitting. I always attributed it to “middle child syndrome” Amethyst(Ame) sang in choir at school, played volleyball, and also tried baton twrilling. She started getting a little clumsey when she was about 16 or 17, but I never really thought much about it. I hadn’t thought much about HD since before I got pregnant with her, in 1987. Back then it was “only men/boys get it”. Fast forward to 2009 Ame gets pregnant for her now
3 year old daughter Emma. Ame is in a bad, mentally and emotionally sometimes physical relationship. She goes through 52 hours of labor and has to have an emergency c-section. I move back home(NY) from California to be closer to my 2 kids here in NY and my granddaughter.
My Mom ask me one day why Ame’s arms and hands seem to twitch and her walking is funny. I said I wasn’t sure, forgot about it. That was in July. Thanksgiving night I was watching Emma. She was asleep and I lay in bed tossing and turning and about 3am the words Huntington’s popped into my head. I sat right up and bed and said “Oh my God, no please don’t be that!” I talked to my Mom about it the
next day, didn’t want to tell Ame, but knew we had to talk about it and go to a Doctor. When I did tell her about it she was devastated, to say the least. We made an appointment with our Dr and of course had to be sent somewhere else…long story short, worst day of our life was March 28, 2012 when we got the positive. Ame’s CAG is 54. Her biggest concern is she wants to be around to see her daughter grow up. This past year and a half has been roller coaster of emotions for both of us. Anger & guilt seem to be my biggest can’t seem to get pass them. Ame had once reached the acceptance stage, but is now back at the anger & “why me” ever since we found out that she actually has JHD. She says she doesn’t understand what she did so wrong in her life to warrant her having this nasty disease, why can’t she live a normal life with her daughter and be able to have another baby and be able to grow old and see her grandchildren. Ame sent in a wish to the Dream Foundation, asking for a trip to San Diego to see her sister and new nephew. We were granted the wish and it was the trip of a life time, however it does seemed to have taken quite the toll on Ame, her Chorea is so much worse, her muscles are so rigid all the time, her legs, arms and back ache all the time. She can hardly sleep nights. I am glad that so far I haven’t seen some things that I know other parents see, the angry outburst, being mean or hitting. I get so scared sometimes looking at Emma, worrying that she will have HD. All we can do is continue to pray for a cure.
I can tell you a couple of things Ame wants on her bucket list
- to go sky diving
- go to Ireland
- go to England
- I know she wants to plan & pay for her funeral (not part of bucket list or maybe it would be)
- She wants to start buying special gifts for her daughters big things, like 16th b/day, graduation, wedding, etc.
- Disney cruise
- When she had to get all her teeth out, Dentist made her false teeth way WAY too big Can’t get any new ones made and we can’t find a doctor who will work with gag reflex from the jhd
- Meeting or seeing Bruno Mars in concert
- NY Giants game
- Seeing The TownsPants an Irish band
You can email her Mom Kim At: firstname.lastname@example.org