We have been learning a lot about Ryker, a #PURAPerfect 17 month old, who was diagnosed with PURA Syndrome at 7 weeks old. His family is proud to report some of his current accomplishments and milestones:
At 17 months old, Ryker can ‘prop sit’ now for several minutes. He has head control for the most part and loves if you carry him around the house on your hip so he can see the sights. We are working on finding a suitable baby carrier that would be supportive enough for him while allowing him to enjoy walking around. He has a stander and Scooby Doo AFO braces that he uses for short periods most days. With the help of his AFOs and his physical therapist, he recently began to stand supported.
He has started voluntarily weight bearing (to some extent) on his legs when Brett picks him up on his chest to play. This is a huge deal because previously he would only keep his legs up in the ‘frog legged’ position if you picked him upright. He has a feeder seat and a wheeled base we use daily. The base is a perfect height for Ryker to interact and play with his big brother. We also take the seat off and attach it to a dining room table chair so that he can eat dinner with us. He has a G-tube and has just begun working on “chewing” food- he loves his banana milkshakes which are really Elecare Jr. banana flavored formula mixed with some rice. He eats small amounts of avocado, cheese puffs, applesauce, mashed potatoes, all kinds of baby food, fruit of all kinds, and carrots from the crockpot. Just the other day he successfully grabbed both a pretzel and a cheese curl off of the tray of his new highchair AND got them in his mouth- invoking both panic and cheering from mommy and daddy! He also shows a strong interest in the spoon and anticipates getting food in his mouth!
#raredisease #rarediseaseawareness #purasyndromeawareness #RareDiseaseDay #WorldRareDiseaseDay #AloneWeAreRare #TogetherWeAreStrong #ReframingRare #rareismany #rareisstrong #rareisproud #advocacy
World Rare Disease Day is just 4 days Away! We Hope you will join the PURA Syndrome Foundation in raising awareness for PURA Syndrome and other rare conditions. Please consider sharing some of Ryker’s story, #ShareYourStory, and #ShowYourStripes on February 29, 2020.
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Rare Disease Day 2020
Ryker’s Rally Point 