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Avery


Avery is a 14-year-old girl living with Rett Syndrome. She loves to be outside, cuddling her grandma and Rolie Polie Olie. She doesn't love being stuck at the rink or ball diamond following her brother around, but at the same time is his biggest cheerleader. Avery is tube fed, has seizures, severe sleep apnea, scoliosis that will require surgery in the next few months, struggles to gain weight, non-ambulatory and non-verbal.


Avery was diagnosed at age 2 at the Alvin Buckwold Center in Saskatoon. Rett syndrome is tricky, most kids develop normally until age 2 then start to lose skills so you don't usually know of the diagnosis until they're toddlers. Some can walk, talk, feed themselves then suddenly, it all slowly fades away. Avery hadn't started to walk or talk, wouldn't bear weight and had some struggles feeding as a baby. She was our first child so we didn't have anything to compare to, all we knew is that she was often crying and we thought just being a bit of a "lazy" baby. As she got to be 18 months and our friends' kiddos were running and falling and all the usual trouble toddlers get into, Avery still sat still. We started the process with therapists, doctors and eventually got the diagnosis of Rett Syndrome. The first thing the developmental paediatrician said before we got the test results back were "I have a suspicion of rett syndrome, but don't go and google it". Of course, we googled. Then we knew for sure.

It hurt to hear the words but we also were relieved to have some guidance and a community. The Rett community is small but mighty. We went to Rett world conferences in Boston and new Orleans, travelled to Alabama to meet Rett specialists, took part in a drug trial in Boston. We tried a 6 week conductive education camp in Ontario, tried eye gaze devices, hippotherapy, naturopaths, anything I could google to try to help her. One of the hardest parts of Rett syndrome is that most girls can't communicate. THEY WANT TO SO BADLY, but Rett makes it so hard for them. They are mostly non verbal, have poor hand use so can't use an Ipad so rely on eye gaze. We've always struggled with eye gaze. She can't tell me if her sadness or anger is because of pain or she misses her grandma; it's all trial and error.


She is extremely resilient though. She is sassy and has typical teenage attitude, and she is one of very few high school kids who can get away with napping during class. She is an excellent role model in demonstrating patience and a great friend. She's taught me that asking for help is ok, and the people around you who care really do want to help.




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