The Keir Family
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You may have recently seen this video of the love between two brothers, one with 22q11.2 Deletion Syndrome. It was made by the Keir Family to show the love and special bond between siblings, especially when one has special needs like 22q. We had a chance to catch up with Gemma Keir to learn more about her family's journey with 22q.
How has 22q changed your family for the better? We have grown as a family, we have become so knowledgable on so many medical terms that associate with 22q. We have done so much research and courses in behaviours to help us understand. We have realised how special time is and that we need to cherish every moment. We are always finding ways to be strong for eachother and smile each day.
How old was your child when diagnosed with 22q? Logan was 3 years old. He underwent open heart surgery as a baby and it wasn’t until he started showing delays and some facial features it got noticed.
What is your child's greatest challenge with this diagnosis? Logan has multiple health issues relating to his 22q. But overall I think he struggles most with delays, communication and his bowel control at this present time. He is only 5 but is globally delayed to about two years of age. We are awaiting an autistic assessment also. He struggles with sleepless nights due to leg pain and a recent diagnosis of Hypermobility, Weak Muscle tone all over and reduced static balance with feet that over pronate. Logan is under 4 hospitals 14 clinics total.
What is their biggest accomplishment? Rocking through open heart surgery!! I have never seen so much bravery and courage. He did us so proud with how he dealt with it all. And just smiling every single day.
What one thing do you most need from the 22q community or our foundation? I like to have family support and be able to discuss similarities in our children with parents that understand what we go through. It’s very difficult otherwise.
What is one thing you enjoy about being part of the 22q community? The understanding means the world. Learning about the condition more and more. Finding ways to help with awareness and research. Making friends along the way from all over the world.
What is your social media contact info so that families interested in your story can connect with you?
Facebook: Gemma Keir https://www.facebook.com/