Aliyah first started showing behavior changes around age 4 and was diagnosed with ADHD and ODD by age 5. At age 8 her speech became slurred and over the years it has become more difficult to understand her. Last year in 2014 her clumsiness and balance issues became a major concern. Her psychiatrist sent her for a neuropsych eval where she was referred to genetics and then neurology. On August 13, 2015, I received Aliyah’s results that she tested positive for JHD. My worst nightmare had become true. She is now being referred to 6-7 other specialists. Aliyah just started 6grade at her new middle school and seems to be loving it. She has been making new friends. Aliyah is still able to walk and talk, and I am hoping to help her keep her strength up so she can remain strong to fight as hard as she can. Her arms and legs seem to be a little stiff, she has the itchy face and mouth movements. She currently sees occupational therapy once a week and soon will be receiving physical therapy services as well to work on her balance. Speech therapy should be starting soon too. School has been accommodating by teaching her how to use the assisted technology devices for when the time comes that she will need them.
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Aliyah is 12 years old and is full of personality-she is always giggling and cracking jokes. She is a girly girl, she probably has about 100 lip glosses and loves to carry a purse around with her. She loves to play with her friends, play with barbies, color, watch movies, listen to music and play on her Ipad. Her favorite singers are Beyonce and Katy Perry. Aliyah is in love with anything Disney princess. Her favorite princess is Aurora (Sleeping Beauty) because her dress is pink and Aliyah’s favorite color is pink. She loves her family and friends very much and is a very caring, sweet and genuine young lady.
January 14, 2018 he’s home sleeping now. They gave her some morphine and she calmed right down. She’s never screamed in pain like that before, it was scary. Normally we just wait out seizures and she sleeps after. But today it was the pain. She was literally screaming in agony. I was helpless and called 911. Glad to be home. I’m sure she will have a very good sleep. XO