The Best of 2020: This is 22Q

It’s another year in the books of living with 22Q for Alisha and our family. What a year it was! Alisha had stomach surgery to correct a perforation in her stomach lining that was causing it to stick to the abdominal wall (complication from the G-tube at birth), she had months of physical therapy to strengthen muscles around her knee (reality of muscle weakness, common to 22Q), and she is now dealing with chronic pain due to the TMJ – the joint that connects your jawbone to your skull.

Alisha is at a doctor’s office more than anyone I know. It is exhausting. She is exhausted and gets only temporary and minimal relief. Our parents get exhausted in managing it all and getting her the medical care she needs when she needs it. We get exhausted filling in the empty spaces as best we can. This is life as it has always been and always will be for us, because we were chosen to love on one of the sweetest and purest-of-heart people I’ve ever known – our sister Alisha – who happens to be a 22Qtie.

Read more about what it’s like to be an adult with 22Q Deletion Syndrome here.

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