Meet Lisa Marie, a beautiful, loving 14 year old. Daughter to Renee and Paul Hodes, sister to David and Marissa whom she all adores. She is a happy, funny little girl who loves arts and crafts, music, and using the phone and computer. Typical you would think for a pre-teen, except Lisa has a few limitations to experiencing being a normal kid. Although hilarious to get random phone calls at two in the morning when she steals one of her siblings’ phones, Lisa has no concept of time and thinks nothing of it. It’s been a rough journey since that moment we found out our little Lulubell has Alternating Hemiplegia of Childhood.
Lisa was born at 7 lbs, 14 oz, 19 in long. She was absolutely perfect, developing as any other chubby baby, eating, babbling, and exploring her environment. It wasn’t until at nine months old we realized she was behind as far as crawling and other abilities. She was very slowly progressing when at ten months she went limp in my arms; she could look at me with her eyes, but could not move a single muscle. Right away we rushed her to doctors and spent the next eleven days in the hospital with a feeding tube and in whole body paralysis. Once Lisa recovered, they sent us home and said she’ll be fine, or so they assured us. Eight days later it happened again. It took ten months and hundreds of tests before one of the doctors came up with AHC. Being there was no test to confirm this diagnosis, I began to research it. There was very limited information at the time, but then I read a mom’s point of view on AHC and knew this was what my baby had.
It took ten months and hundreds of tests before one of the doctors came up with AHC.
Lisa continued to have episodes of paralysis on and off. They could last for hours, days, even weeks sometimes affecting only one side of her body, sometimes both. After most episodes Lisa would lose skills she had worked so hard to gain and we would have to start all over. She finally walked independently at the age of three. At age six, Lisa began having different episodes, Dystonia which is the stiffening of her muscles, which is extremely painful for her. Now, we never know what to expect day to day. We never know what will trigger it whether it be the wind, a loud siren, being too hot, too cold, a bath, bright lights, being too tired, too excited or just laughing too much can all trigger an episode.
Lisa has come a long way with the help of her therapists and teachers. On good days she can use a fork, but prefers a spoon as she scoops her food, and she can drink from a cup. She can cut a not-so-straight line with scissors, and when really determined color in the lines. She needs assistance to change her clothes, take a bath, brush her teeth and hair, and use the bathroom when she can. Academically, Lisa has begun to read beginning 2nd grade level, but math concepts escape her. She is in a small special education class where she has a one-on-one aide to assist her with walking and when she has episodes or needs her wheel chair. She also receives speech, physical, occupational, and visual therapy. Lisa loves to go to school and is very caring towards the other children, although she seeks the attention of the adults more as they understand her speech and needs better. Lisa needs to be watched closely as she lacks the ability to make good safe choices. The last 2 years have brought out a lot of behavioral issues that have impacted greatly on her school and home life. Lisa has learned the hard way that in order to make it over the hurdles in life you must have a strong will and be determined to succeed.
Even during an episode, she loves to be with her friends and family and enjoy life as much as to her abilities allow her.
Lisa loves people! Although shy at first, she eventually comes around. She attends a recreation program for special needs kids. On Thursdays she bowls and on Saturdays she goes on trips. They bring her stroller with them in case she gets tired or overexcited and has an episode. Lisa’s most favorite thing to do is go out to eat. She loves food! Sadly, Lisa doesn’t have many play dates as she gets herself so excited that someone is coming to her house she is unable to play as her excitement causes episodes. We are also hesitant to bring her to parties (but we always do) for the same reason. Even during an episode, she loves to be with her friends and family and enjoy life as much as to her abilities allow her.