Ryan Knorr's Fundraiser
Let's Raise Awareness for PURA Syndrome
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We are no longer accepting donations on this campaign, but there are other ways for you to support us today!
Join me in supporting the PURA Syndrome Foundation!
It’s Rare Disease Day! Ryan was born with an extremely rare genetic disorder called PURA Syndrome. When he was born, only about 180 other people were diagnosed in the world. Now there are maybe 500 in the WORLD.
Ryan is doing amazing. He walks/runs, says some words, seizure free- all things that we didn’t know would happen! Most with PURA Syndrome do not walk or if they do it is with a walker and/or gaited. Most never say a word and many have seizures- some controlled and others are uncontrollable!
PURA Syndrome is “de novo” which means of no cause- a spontaneous mishap.
Ryan has come along way since he was born! He started out with no neck control, had a very hard time feeding (but we fought extremely hard for him to not need a feeding tube- also something that is common with PURA), could not control his temperature (had a 92.1 temp which caused them to look to find his diagnosis), low tone, could not cry, but has always been very, very loved!
We adore this special, rare boy with all of our hearts! Help us celebrate Rare Disease Day & if you are able, please consider donating!