Dye It For Dravet

Christina Suplee

May 22, 2023 12:00am - August 31, 2023 11:59pm

Dye it for Dravet: Lainy

Lainy's story

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Imagine your child being sick and not having medicine to give her to help her feel better. It's not that you don't have it at home, and you need to run to the store to get the medicine. You don't have medicine to give your child, because the medicine that could help your child feel better doesn't exist. This is the reality for my cousin, Kristin, and her husband Mat and their daughter Lainy.

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Lainy loves the water, dogs, Sesame Street, and Cocomelon. To quote her mom, Kristin, "She has so much empathy and the best belly laugh you've ever heard." Lainy loves to dance and has just started to go up to kids on the playground and bravely say "Hi, I'm Lainy."

 

 

 

And although these moments are part of the story, there's another side too. Lainy has dravet syndrome, which is a rare and intense form of epilepsy. Currently Lainy has a status seizure, meaning one where she has to go to the hospital, every couple of months. In the big picture, Kristin says this is actually pretty good.

But Lainy has pretty severe myoclonic seizures every single day. Kristin says "she wakes up having seizures, goes to bed having seizures, and they are now happening more frequently for longer periods of time, and are more aggresive than ever before."

Lainy has now tried 12 medications, 1 neuro-surgery and 1 extreme diet. But none of this is a cure. And that's where YOU come in. I'm asking 2 things.

1. Pray. Lainy's aunt prays for Lainy every day at 10:17 morning and evening in honor of Lainy being born October 17. Will you set a timer for each day for the month of June for the morning and/or the evening and join us? We believe in the power of prayer. Will you pray for a miracle and for Lainy to be cured? Will you pray for good days with minimal seizures? Will you get on your knees and pray for a cure to be found?

2. Give. Money does things that cannot happen without it. Researchers, scientists, doctors are working on a cure. Will you give money for them to help find a cure?

If we raise $500 I will dye my hair purple.
If we raise $1000 Maverick will add purple to his hair.
If we raise $1500 Ryder will add purple to his hair.
If we raise $2000 Tyler will dye his hair purple.

We've had to add more hair dyers since we already beat our original goal of raising $2000. Thank you to everyone who has given so far! The Suplee family will all be having purple hair very soon!

If we raise $2500 Josiah (Lainy's cousin) will add purple to his hair.
If we raise $3000 Judah (Lainy's cousin) will add purple to his hair.
If we raise $3500 Jadon (Lainy's cousin) will add purple to his hair.
If we raise $4000 Jonah (Lainy's cousin) will add purple to his hair.
If we raise $4500 Amy (my sister in law) and Willa (my niece) will dye her hair purple.
If we raise $5000 Cindy (my mom) will dye her hair purple.

If we raise $10,000 Kim Wolbrecht will dye her hair purple.

To be continued....

Have someone you want to see with purple hair? Reach out to me, and I'll try and get them added! Everyone has a price :)

Let's Dye it for Dravet Together!

$8,829.61

achieved

My Supporters

  • Blythe Schwab July 2023 $25.00
  • Jane Victor July 2023
  • Marrianna and Fred Stricker June 2023
  • Kristin Quinlan June 2023 $100.00
  • Heather Sides June 2023 $51.79
  • Molly Franey June 2023 $258.97
  • Kristin Quinlan June 2023 $100.00
  • Heather Sides June 2023 $51.79
  • Susan Busch Sending love and prayers June 2023 $51.79
  • Sara Guthrie June 2023 $51.79

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