With the 22q11.2 diagnosis, there is life expectancy to be aware of. Google is no friend of mine when it comes to this topic; it wasn’t helpful when we were at Children’s and it’s not helpful now. While there is a very small percentage of children with 22q who don’t make it past age 3 due to the severity of their symptoms or lack of treatment, the majority of those diagnosed survive well into adulthood.
As I was moving through my 5 stages of grief, I contacted Izzy’s geneticist and asked her point blank – what is my daughter’s life expectancy? While we are so very fortunate to not have infancy or toddlerhood or even adolescence as our answer, it still hits you a certain way to hear that your child will only live until around the age of 45.
45 is young. It’s not 3, but it’s young.
About 10 seconds after hearing this, I was crying, but after about 10 minutes, I came to the conclusion that Izzy will live her best life. She has 45 years to see the world, and it is my duty to show her. We will not panic or over analyze this expected age, we will not hold her back because of fear, we will not shelter her or keep her in a bubble because of her sickness. We will celebrate her here with us, we will open every door we can for her, we will let her live.
And as her dad reminded me, medicine is changing every day. Science is evolving every day. We never know for sure what could happen or how her life will go, but as always, there’s hope.