We are a group of friends rallying around a family affected by a rare neurological condition - Dravet Syndrome.
06/27/2020
Check out Harrison jamming with one of his birthday presents. šø š Harry loves to sing, dance, and make music š¶
Harrison has a called . It's . Please help us spread awareness by sharing this post!
Dravet syndrome is a severe type of epilepsy characterized by prolonged seizures that begin in the first year of life. It is a rare condition that affects one in 20,000 to 40,000 people worldwide.
Harry is the reason we say
If you are able, please consider making a donation using the link below. Every penny raised helps fund important research that could directly affect Harrison's life and the lives of others.
Today on national PTSD Awareness Day, we want to acknowledge the PTSD that caregivers of those with with Dravet Syndrome face in caring for their loved one.
It's . Please help us spread awareness of this .
takes a toll on the entire family!
If you are able, please consider making a donation using the link below. Every penny raised helps fund important research that could directly affect Harrison's life and the lives of others.
It's . Please help us spread awareness of this .
takes a toll on the entire family, emotionally and financially.
If you are able, please consider making a donation using the link below. Every penny raised helps fund important research that could directly affect Harrison's life and the lives of others.
While most people are receiving small bits of encouragement like, "During a crisis talk to people you trust." Harrison's parents are preparing for their worst nightmare.
He is thoughtful, clever, honest, witty, humble, curious, resourceful, encouraging, kind, a protector, & hopeful (and so much more).
YOU could help save his son's life & the lives of others. Every donation helps fund critical Dravet syndrome research & could lead to a cure.
What can you do?
----> Like & share this page to help us teach people & spread awareness about his son's rare, neurological, seizure disorder
----> Make a donation to help fund research
Meet Harrison's mom, Leanne!
She is wonderful, inspiring, patient, creative, caring, funny, determined, laid-back, talented, strong, & hopeful (and so much more).
YOU could help save her son's life & the lives of others. Every donation helps fund critical Dravet syndrome research & could lead to a cure.
What can you do?
----> Like & share this page to help us teach people & spread awareness about her son's rare, neurological, seizure disorder
----> Make a donation to help fund research
constant - all the time, every day, every minute, 24/7 - 365, day & night... vigilantly watching for any signs of a seizure & ensuring someone is ready to respond.
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Contact The Organization
Send a message to Not Today Dravet - in honor of Harrison:
Not Today Dravet is a group of friends rallying around a family affected by a rare neurological condition known as Dravet Syndrome. Our goal is to raise money for the Dravet Syndrome Foundation (DSF). DSF is a non-profit organization whose mission is to aggressively raise funds for research that can one day lead to a cure for Dravet syndrome and related epilepsies. Additionally, DSF exists to increase awareness for these catastrophic conditions and to provide support to affected individuals and families.
Harrisonās seizures started at 2.5 months old and took from our friends the joy of experiencing the world through his eyes. Many parents enjoy the excitement of watching their little ones grow and learn from everything around them, because everything is new & exciting. . . leaves, grass, clouds, playing on the playground, meeting new friends, splashing in puddles, and so much more.
This is not the case for Harry and his family, in fact, Harrison has had a seizure after simply looking at the sky. Our friends canāt go to the park and talk about all the great things they see with their son. They canāt take him to their friendsā houses and share his smile and sweet laugh with the community that loves them. They canāt wake up refreshed in the morning and greet the day. Their days are spent in the house in the dark because any illness can trigger seizures, because sunlight triggers seizures, because temperature changes trigger seizures. They have spent more days in a hospital in the last year and a half then most people do in their lifetime. There are weeks when they are at the hospital multiple times or for multiple days in a row. Even the hospital isnāt a guaranteed safe place for Harry, because something as simple as a pattern on his nurseās scrub top could trigger a seizure. They sleep the sleep of someone waiting for something to happen, taking shifts to stay watchful for the next seizure so they can call the ambulance right away and deliver rescue meds.
Harrison loves listening to music. He is quite the connoisseur, in fact, he prefers 60s hits on vinyl. He loves to pick the record and will tap his finger to his chin as if he is contemplating something serious until the perfect track is found. Then he will hum and dance along to all of his favorite songs. He loves to read books, treat mommy and daddy like horses, and answer āno?ā in response to most questions. He is such a happy boy and he deserves the world.
In spite all of the things that Dravet takes away from this family, they improvise. They find joy in all the moments that they share and all the things that they can access. They fight on and make the world as normal as they can for their child.
Please rally with us to raise funds for the Dravet Syndrome Foundation! Whether you donate $1 or $1,000,000, every little bit helps. Your contribution has the power to transform and save Harryās life as well as those around the world.
