On Saturday November 13th 2021, Arya’s family & friends will be walking in her honour.
Arya Mae Kennedy was born with Ohtahara Syndrome, and tragically lost her life to this terrible diagnosis.
Ohtahara syndrome is an uncommon type of epilepsy characterized by hard to control seizures and developmental delays. The disorder affects infants, usually within the first three months of life in the form of epileptic seizures. Infants have primarily tonic seizures, but may also experience focal seizures, and rarely, myoclonic seizures.
The course of Ohtahara syndrome is severely progressive. If epilepsy surgery is not feasible, seizures become more frequent and are accompanied by delays in physical and cognitive development. Some children will die in infancy; others will survive but usually have severe handicaps. As they grow, some children will progress into other epilepsy syndromes such as West syndrome and Lennox-Gastaut syndrome.
A Walk For Arya
Date & Time: Saturday, November 13th @ 11:30am
Location: Speed River - Royal Recreational Trail, Guelph Ontario
Arya’s parents, Jessica & Aaron have organized this walk to remember and honour their beautiful baby daughter, but also bring awareness and support other families who are dealing with this terrible diagnosis.
“We will be meeting at Royal Recreational Trail at 11:30am, there will be warm beverages provided as well as purple ribbons to wear. We will begin the walk at noon.
We are doing this walk in Arya’s honour to raise money for epilepsy research in hopes of one day finding a cure.”
To join Jessica & Aaron in person, please email Jessica
Arya’s Story
“Arya’s story began on July 6, 2020 at 9:23pm, the day she was born. There were so many emotions going into this day, excitement, wonder, fear… but little did we know just how much fear we were about to experience. Three hours after Arya was born she began to have seizures. At the time they started, no one knew that’s what was happening.
Over the course of the next four months, Arya would go through many tests as the incredible team of doctors and nurses tried to figure out why this was happening to our little girl.
Through CFM & EEG monitoring of her brain activity during and between her seizures, they were completely sure that this was Ohtahara Syndrome. With this diagnosis we were also told that Arya was not going to live to her first birthday.
Over the next few weeks we began to see Arya’s condition deteriorate. As her parents we were forced to decide how Arya’s inevitable death was going to happen. We wanted it to be as peaceful and painless as possible so we chose a date and a time to remove her supports and let her go.
On November 26, 2020 Arya died with both her mommy and daddy holding her and kissing her. She is greatly missed by us, her family and so many others, every moment of every day. She'll forever be our sweetest peach, and cutest peanut, and now she flies with butterflies!”
Read Arya’s full story here
Join Virtually
for
Ohtahara Awareness Day November 15th
Walk anywhere, anytime between Saturday November 13th - Monday November 15th
Create your own fundraising page by:
Clicking on the register link below
Scroll down the page and look for the button “Create My Own Fundraising Page”
Create your own page and share it with friends and family
DOWNLOAD SPONSHIP PACKAGE