Our daughter Olivia Marie was diagnosed with 22q Deletion Syndrome at the age of 6 weeks old. We spent the first 2 months of her life in the hospital trying to figure out what was wrong with her. At 6 weeks old she had heart surgery and was soon released home with several medical machines, medications, a nasogastric tube for feeding and several instructions that didn't seem humanly possible. 22Q Deletion is the second most common disorder to Down syndrome, but yet we had never heard of it until it hit home. This why the 22Q.org has began a yearly awareness day called 22Q at the Zoo. Different parts of the globe with those affected participate each year at their own local zoo , such as Australia, Scotland, Japan, Canada. This year our awareness day will be May 19th at the Santa Ana Zoo. Parents and those willing are in charge of getting together there zoo day for their region. For the past 2 years my husband and I along with family have coordinated this day. Our hopes are to have an amazing, informative, beautiful day for families of those affected and to the public. 22Q is a deletion in the 22nd chromosome that affects over 200 functions of a human body. Currently Olivia is on 10 medications daily, is 100% dependent on a Gtube which is a tube inserted through her stomach that delivers blenderized food directly to her stomach, developmentally delayed, signs for speech/communication, uses oxygen at night for sleep apnea, uses AFOS(braces on legs) heart surgery, polydactyl surgery, ear tubes, and a few other things. What I have learned is everyone's situation is different and things could always be worse, we are blessed. Our goal is to continue awareness so that more people, doctor's, therapists, teachers are more aware of 22Q which will in turn give families like mine the support that we yearn for. For more information on 22Q please go to www.22q.org.
Thank you to all and God Bless.
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