21
21
4

David’s Fight to Cure CDKL5

$1,860 of $2,000 goal

Raised by 24 people in 14 months
At just a few weeks old, we realized something wasn’t quite right with David. We took him to the doctor who thought we were seeing symptoms of reflux. Knowing in our gut that this wasn’t accurate, we got in with a neurologist. After a multitude of tests they told us that David had infantile spasms and intractable epilepsy and probably wouldn’t live past five. We didn’t stop at this diagnosis though. His actions weren’t quite what the definitions of the disorders explained. He was more than what the doctors said and we needed to find answers. At seven years old, he was being monitored and a new test had been developed. Doctors weren’t sure if David was a candidate for it. After deliberating, they approved him for the test.
The week of mother’s day, 2011, we finally got an answer. David was diagnosed with a very rare disorder called CDKL5. There was no treatment, no cure, no support.
Within the next year we were introduced to Dr. Helen Leonard in Australia who is at the head of reasearch for CDKL5. Over the years we have been on a team of families gathering information for research and to help those diagnosed in the future.
David is now nearing 14 years old and has endured well over 60,000 seizures with no treatments helping. He cannot walk, talk, nor feed himself, is wheelchair bound and 100% dependent on others to survive. But, we have hope. Due to so few being stricken with this disorder, research funds are scarce.
Please help us in raising research money for CDKL5.
Our family will be going to the conference this June in a Colorado and will be presenting the check to the IFCR team at that time.
28163486_1520221068.0694_funddescription
+ Read More
Thank you all again for your generosity! We were able to bring $2150 to the IFCR conference last week. What an amazing experience to be able to share with other families going through CDKL5. We met incredible people, met with doctors, heard countless informative seminars, and the kids got to hang out with other CDKL5 siblings. Truly a priceless experience. Here is a picture of us presenting the president of the IFCR with the checks.
+ Read More
Well we did it!!! We are bringing over $2000 to the conference this week to present the International Foundation for CDKL5 Research the checks. We have filled in the fundraising gap to bring one check to $2000 and have a check from an additional donor for $150. We will try to take pictures to post. Hopefully we will learn some new things and any progress updates on finding a cure for kids like our David. Thanks for all who donated and for those who pray for our sweet boy.
+ Read More
Y’all are amazing, we reached our first goal, so I am bumping it up. The more the better to find a cure for this devastating disorder. We WILL find a cure for CDKL5!!!!
+ Read More
In just a few days, we've nearly reached our original goal. Let's blow it out of the water. Today's challenge: Instead of buying a $5 coffee, pledge $5 to help cure CDKL5. I can't wait to present the IFCR with our check!
+ Read More
Read a Previous Update

$1,860 of $2,000 goal

Raised by 24 people in 14 months
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
KW
$10
Kyle Wascom
11 months ago
$75
Anonymous
11 months ago
LH
$100
Loretta Honore
11 months ago
$25
Amanda Clarke Laitinen
11 months ago
AM
$10
Andi M.
11 months ago
JG
$50
Janis Goodale
11 months ago
CR
$20
Christina Rodriguez
11 months ago
BC
$100
Ben Caitlin Travis Cornish
12 months ago
NC
$100
Nancy Croney
12 months ago
PL
$20
Penny Lockwood
13 months ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.