Maughansters
A nonprofit fundraiser supporting
KBG Foundation IncFunding a treatment takes a dang village. Raising him takes a team because villages like to sleep.
$325
raised by 7 people
$1,000 goal
What a night. A bad night.
Bug had a horrible night. I can't begin to describe the pain of watching your child gagging every 7 minutes and then having a tonic/clonic seizure every 15 minutes. He needs a treatment! He needs relief! He needs to get back to that happy child he used to be, that child he was before the seizures started. The seizures that are made worse by KBG Syndrome. Even within his diagnosis he has some of the worst seizures.
I need to get him help.
Thank you to his friends that are donating and sharing!
Many years have passed since we realized our son wasn't like everyone else and many emotions have run through us. At first, we were sad, but that was replaced by joy that he is still happy and has always found a way to smile through it.
Bug has epilepsy, tethered cord syndrome (released), severe cognitive delay, extreme GERD, is nonverbal, short fingers and toes, wide palms with simian lines on both and a smile that makes you feel like you have been given a gift. He's magic and he's broken.
Broken in the ANKRD11 gene which means he has KBG Syndrome. Because he is, we are raising awareness for KBG Syndrome in hopes to find a treatment that can help. Our goal is $1,000. Any little bit helps and more importantly...sharing. Can't contribute? Share. Don't know anything about KBG? Most people don't so share and help them learn.
Bug thanks you. #teamBug