Login

Welcome to Team Julian 's team Page

Team Julian

Team Julian

Thank you for visiting! This is Julian (3) and big brother Hugo (5). Julian had his first seizure when he was 4 months old. It was 45 minutes long. After a year long barrage of tests (MRI, EEG, genetic testing after battling with our insurance) and waiting, we got the diagnosis of Dravet Syndrome. When you google it, it's scary. There are many and multiple kinds of seizures, developmental delays, motor skills delays, a tendency for it to get worse over time, and a scary thing called Sudden Unexplained Death related to Epilepsy (SUDEP) that steals children in the middle of the night with unknown cause. It has been a wild ride, to be diagnosed with something so rare, and that they know so little about.

In spite of all that, Julian has exceeded expectations at every turn. He is a spunky, energetic, and caring little explorer. He loves his brother, his dog, music, cooking, being outside and riding his bicycle. He has more empathy than any other kid I've met, and will notice and comfort a child crying from across a crowded room.

There's no cure for Dravet Syndrome. And most of the medications to control seizures don't work well. We need more research, and for that I ask you: please spread the word so that more people have heard of Dravet Syndrome ("Dravet" rhymes with "ballet" and "5K"), and if you have a $ to donate that would be amazing.

Dravet Syndrome Foundation is a non-profit that raises $ for research, and provides some help to families that can't afford all the many drugs/equipment/therapies needed. You can read more here: dravetfoundation.org/dsf-funded-research

Thank you to the amazing folks at UCSF that care for our children, and are working hard to find medications that will be more effective and with less side effects. You can read more about the research here:
ucsf.edu/news/2017/03/405986/zebrafish-patient-approach-speeds-search-childhood-epilepsy-treatments

THANK YOU FOR YOUR SUPPORT!!!!

Deborah Chang
  • JCJulian Chang
$27,260.00
$22,467.06
AL
$10,025.00
AW
$5,000.00
$1,780.00
$1,265.00
BJ
$235.00
JL
Jennifer Leong
  • EWElla Wang
$200.00
MS
$135.00
SS
$35.00
ZM
$35.00

Comments

$98,477.06
raised of $100,000 goal
 

17 Participants

recruited
Join Our Team

Recent Donations

$150.00
1. DGDell Giving
Matching gift - Christopher Shannon
$50.00
2. AMAirbnb Matching Gift
matching gift from Mandy Owen
$400.00
3. BCBenevity Community Impact Fund Matching Gift
Matching gift for Rafal Waligora
$100.00
4. BCBenevity Community Impact Matching Gift
Matching gift for Julie Pierron
$1,000.00
5. BLBob & Sue Levis
$100.00
6. KDKristy Dutch