Today we got this e-mail from Teddy's case worker:
Hello Kerry, Great News. The Family Support Team approved long term support funding for the Axiom Race Chair! Everyone wants to see a picture of you and Teddy in action after you receive the chair J I will talk with Adaptive Star next week.
And then I proceeded to do my happy dance. This means that we'll have a way to go biking next summer as a family because there's no way that Teddy would still fit in our pull-behind carrier because it was a squish to get him in there this year. This means that Teddy and I can go for a run on the weekend together or join the local running groups who do evening runs. We tried a few times this summer, but the running stroller I have is not meant for a large 6-year-old. It barely worked until the last run we did, which was our last run with the stroller, because Teddy learned that it makes a cool sound when he drags his foot on the ground. It also feels neat ... until he breaks his foot or ankle.
The Axiom Race Chair is essentially the same chair Teddy uses when he races with myTEAM Triumph. We can (and will) order a chair large enough that it should last Teddy for years to come because he's ridden in all different sized race chairs. The same chair can be used for racing as well as being pulled behind a regular bicycle.
This is such a blessing for our family!
This is our family's journey with the rare PIGN genetic disorder Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. When our son was diagnosed in November 2015, we were told he was the 15th documented case in the world. We've discovered more affected individuals since, but it's still an extremely rare and unknown condition since its discovery in 2011. Our hope is to create awareness of the disorder and foster a sense of community among those affected by the disorder.
Thursday, October 17, 2019
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