Ryan and Jenny Dempster’s beautiful daughter Riley was born in April 2009 with a 22q11.2 deletion, a disorder caused by a deletion on chromosome 22q11.2, that seriously impeded her ability to feed and swallow.
At only one month old, Riley settled into Children’s Memorial Hospital for 12, long weeks of testing; physical, occupational and speech therapy; surgery to insert a tracheostomy and a gastrostomy (‘g-tube’) for feeding; and a procedure called a Nissen Fundoplication to reduce reflux into Riley’s esophagus. One tough little fighter, Riley finally went home to round-the-clock care (and some fun too, even attending a few Cubs games).
Several weeks before her first birthday, Riley started to crawl. She progressed from crawling to pulling up to standing and “cruising” the furniture in a very short time. By her first birthday, Riley was still on trach and feeding tubes, but she was hitting developmental milestones right on target with help from continued physical, occupational and speech therapists. Riley was also working with a Passy-Muir valve (a one-way valve that attaches to the outside opening of the tracheostomy tube and allows air to pass into the trach, but not out through it). She was beginning to coo and trying to talk, which was music to the Dempster family’s ears! Riley even ate some of her first birthday cake! She was soon sampling whatever the family was eating and making sounds and imitating words.
At 14 months, the Dempsters received some miraculous news: Riley’s doctors recommended removing her trach! The family was thrilled beyond words since they were told that Riley might have to live with the trach her entire life.
After her trach was removed, Riley still received most of her caloric intake through her g-tube at night, but she slowly began to explore new foods and new worlds as a toddler. In January 2011, more great news came for Riley. The doctors removed her g-tube! Now Riley receives 100 percent of her nutrition orally.
The Dempsters realize that Riley will experience the ups and downs of living with the syndrome for the rest of her life as do all the children with 22q deletion and their families. But thanks to her early diagnosis, extraordinary care and the Dempster’s ongoing commitment, Riley is doing great!
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