Shilpi Khera
Team HopeforHiya
Fundraising for International Foundation For Cdkl5 Research
Story
Join me as I fundraise to help the IFCR - Move CDKL5 Forward!
IFCR is working hard to help kids like Hiya. Hiya is turning 14 this June & as always please help her celebrate this birthday, by helping IFCR.
Hiya our daughter got the diagnosis of CDKL5 when she was 5 year old ...after multiple of test done on her, we got to know the name of this rare condition.Nothing much changed for us, when i found this name as there was no CURE, until I got connected with IFCR.
IFCR is an organization started by a group of dedicated parents of CDKL5 children , to find a CURE. This organization collaborates with leading scientists and researchers from around the world who are dedicated to finding a cure for CDKL5.
Some facts about this diagnosis
-By the time a child with CDKL5 is 7 years old, he/she will have had over 20,000 seizures (yes, twenty thousand)
-Almost all children with CDKL5 cannot speak, we are their voice
-4 out of 5 children with CDKL5 cannot walk independently
-Many of these kids has some kind of visual imapairment
These are some of the facts, but we have struggles everyday.
Still, if given a choice, we would choose this life all over again, if it meant knowing and loving our child.
We need CURE & IFCR is working hard which gives us HOPE everyday. We need your help.
Support our team to help IFCR--- Make a donation right here on my page. How much? How about $30 for 30 days in June? Whatever amount you donate, large or small, please know that, I appreciate your generosity!
Get out and MOVE in June! Want to 5K? Great! Go for a bike ride? Awesome! Get out for a leisurely walk? It's all good! Post your activities on social media with the hashtag #CDKL5Forward to help spread awareness!
The IFCR has a goal of 5,000 miles moved and $50,000 raised for CDKL5 this June and it will take all of us to get there!
Here is the link to submit your miles or you can give me your miles at end of the month & i will submit it on your behalf.
https://www.cdkl5.com/move-
Thanks for supporting my Team(#HopeforHiya) and helping to Move CDKL5 Forward !
HOPE | LOVE | CURE
