Annalise has Prader-Willi syndrome. Prader-Willi can cause different types of developmental and cognitive delays. She has low muscle tone. We see a physical therapist 4 times a week to work on strengthening and her gross motor skills. The only treatments currently are growth hormones so we see a lot of different therapists each week to try to work on all of her milestones in speech, fine motor and gross motor skills. One of the hallmark characteristics of Prader-Willi is hyperphagia which is the feeling of never being full which can lead to dangerous overeating. Their metabolism is much slower than a neurotypical child which makes exercising very important in keeping their weight in a healthy range. She also has infantile scoliosis so she wears a brace all day and we focus a lot on core strength in all of her therapies.
Annalise is the sweetest, happiest child you will ever meet. She has Prader-Willi syndrome which causes lots of different developmental/intellectual delays. She works endlessly with all of her therapies every week and always has such a happy demeanor. She has low muscle tone and so we work with physical therapists doing all sorts of exercises for strengthening and her gross motor skills. She participates in speech, music therapy, physical therapy, occupational therapy, aqua therapy, feeding therapy, and a group preschool therapy class each week. Prader-Willi also causes hyperphagia which is the feeling of never being full as well as a decreased metabolism so exercise is very important along with a very strict diet with no sugar or simple carbs. Because of her low tone she also has infantile scoliosis so she has to wear a brace all day long.
Annalise is such a joy in our lives and loves to try to keep up and be included with her 3 year old sister. She enjoys being outside swinging, riding in their motorized play car together, and going for walks in the wagon. She just recently took her first few steps which is very exciting. I know she will love when she can finally walk and run to be able to keep up with her sister and cousins. They love to play together and I know that this tricycle would allow her to be able to play outside with her sister while being able to exercise in a fun way. This tricycle also has handlebars that cycle that will help her to work her upper body and core which is so important for strengthening with her scoliosis. I love when we are able to find ways to include Annalise with her sister so she gets to feel like any other child, and it’s amazing that this bike has some adaptations that will allow her to be able to ride right along with her.
If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate
Thank you for joining our #inclusionrevolution
