MobilityWorks
Accessibility for all: Helping people connect with who and what matters most
Searching...
No results found. Please try modifying your search.
It was confirmed that she was having seizures and the following weeks were spent trying to get them under control. While there, the neurologist sent a genetic panel to find out *why* Avery was having untreatable seizures. Three long weeks later, we had our answer – CDKL5 Deficiency Disorder.
CDKL5 deficiency disorder is a rare developmental epileptic encephalopathy caused by mutations in the CDKL5 gene, and this can manifest in a broad range of clinical symptoms and severity. The hallmarks are early-onset, intractable epilepsy and neurodevelopmental delay impacting cognitive, motor, speech, and visual function.
The CDKL5 gene provides instructions for making proteins that are essential for normal brain and neuron development.
At 7 years old, Avery’s seizures are still not controlled. She is non-verbal and uses a wheelchair to get abound. She is also the sweetest little girl you will ever meet. Her sisters dote on her and her whole family loves her fiercely.
Avery has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
Loading Images
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Avery B. Kozera
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.
Subscribe to this campaign to receive updates.
Accessibility for all: Helping people connect with who and what matters most
Building leading-edge mobility products
One of the largest mobility dealers in the U.S.
Consult with specially-trained pharmacists, get your medications for pickup or delivery and more
All news, and all that matters to you
Your first step to optimized communications
The event for the disability community
Born to connect, empower and inspire the rare disease community.
A mobility dealer for wheelchair accessible vehicles and adaptive equipment