site logo

Meet a Child with 22q

Dynamic Dani!

GEMSS would like to thank Dani and her mother for their generosity in sharing this story with us. You have made the site come to life with the addition of your thoughts and feelings. Thank you so much!

Dani lives in a small New England college town with her parents. Having just turned three, she is transitioning from Early Supports and Service (ESS or Early Intervention) to educational and other services in her community. She will be in a combination of a local private Preschool/Child Care and the Preschool run by her town’s public school system.

Her Mother Kim describes Dani as an active little girl who is mildly involved with 22q. She likes to be around people she likes and asks to see her twin cousins every single day! They are 3 months younger and one of them, who is quiet like Dani, is Dani’s best friend in the world.

Dani is “really fun,” very active, and loves to be outside. She might be shy when she meets someone but warms up as she gets to know the person.

Dani was first diagnosed after she was late on some developmental milestones and was referred at about 18 months because she wasn’t speaking. She was referred to a neurologist who made the diagnosis after doing some testing.

Dani started talking near her third birthday and now signs as well as speaks (about 75% talking and 25% signing, but often does both at the same time). She has made great gains with her OT, PT and Speech therapies in ESS. Dani has some challenges with low muscle tone in her core and hands especially. She has no cardiac issues but does have some difficulty with her immune system. For example, if she gets a cold, she may have it for months. She is active all the time and “never sits still” according to her mother. Dani has sensory sensitivities, especially to noises and water. Bath time is especially challenging. Kim has found that giving her choices and helping her feel like she in in control work very well in helping Dani feel like she is in charge. And that eliminates her getting upset. For instance, instead of telling her to eat her sandwich, she may give her a choice of two healthy items, such as sandwich or apple. “Most often she chooses what I wanted her to choose anyway!” says Kim!

She advises parents to be very positive and to “Keep some time for yourself. Step back to look at what you have instead of what you don’t have.” Kim has found the *Dempster Foundation’s Website extremely helpful and it even has a “Family Locator” for families wishing to connect to other families. 

Kim also advises teachers to be patient, and to try to be open to different techniques. She states, “Dani can understand everything but sometimes just doesn’t want to talk. Every child with this (condition) is extremely different.”


*The Dempster Family Foundation is no longer in operation, but many of their resources found a home within The 22q Family Foundation.

If you have a story you would like us to consider adding to our website, please contact us.