In May we took a break from our regular reporting to ask for help from the community. Our son suffers from rare genetic disorder called Costeff Syndrome which causes gross motor development issues. Cole uses a walker, wagon or stroller to go long distances and his PT recommended that an adaptive trike would help with his strength and provide him with more independence.
We partnered with Capital City AMBUCS who helps individuals fundraise for the needed trikes and bikes. But we we wanted to do more so we worked with Capital City to take any extra donations and spread them out with any other individuals who were also in need. Our dream is to give everyone who needs a trike or a bike their very own.
So we asked our family, friends and of course the rugby community for some help. We were absolutely overwhelmed with the response, 43 of you donated! We raised all the funds we needed in less than 72 hours and you provided additional donations for four other trikes!!!!
So from the bottom of our hearts, THANK YOU for the support. If you missed out but still want to help out, simply choose one of the kids and make a donation in their honor.
More on Cole’s journey below.
We’re taking a small break from our normal #wrugby posts on insta today. Most you are aware that the founders of this website have a four year old son. Most don’t know that suffers from a rare genetic disorder called Costeff Syndrome which causes gross motor development issues. pic.twitter.com/9U4aR0TWC4— YSC Rugby (@yscrugby) May 8, 2019
He works very hard at PT and OT and is now wearing AFO braces on both legs. These have helped him take more steps and stand stationary without assistance for up to 30 seconds. For longer distances he requires a walker or other assistive devices. We have recently purchased him a pic.twitter.com/Nk18XNBnKo— YSC Rugby (@yscrugby) May 8, 2019
new walker that allows him to run and play outside in the grass and on various surfaces but his favorite thing is to ride a bike.In Cole’s short four years he’s required lots of doctor appointments, tests, therapies and equipment. If you add it all up our family has already — YSC Rugby (@yscrugby) May 8, 2019
paid for a year of college! So, we’ve decided to reach out to a great organization to help with our next wish list item for Cole…an adapted bike (tryke) from Capital City AMBUCS! Cole is already using one of these bikes at school and he says it “makes him happy.” This local non— YSC Rugby (@yscrugby) May 8, 2019
-profit raises money through donations, grants and fundraisers and bikes are delivered as funds are raised. However, a recipient can receive their bike faster if they help raise the funds.We’ve got Cole on the list, but this is where we need your help. — YSC Rugby (@yscrugby) May 8, 2019
We feel a little guilty asking for help because honestly we could just pay for the bike ourselves, but we want to do something more. The bikes range from $800 to $2500 and we want to ask our extended rugby family to donate what they can. Our goal is to raise enough funds for— YSC Rugby (@yscrugby) May 8, 2019
Cole and any excess funds would be donated to the other 16 individuals that are also in need! Wouldn’t it be amazing if we could raise enough money for all those waiting?Donations can be made on the Capital City AMBUCS website: https://t.co/I4Hz9eVL5h pic.twitter.com/dQSL7vLn5s — YSC Rugby (@yscrugby) May 8, 2019