Skip to content

Hope, Love, and Cure CDKL5 for Deanna!

Organized by: Emma Reynolds

Emma's Photo

THE STORY:

Deanna has CDKL5. It is a rare non-inherited genetic mutation that leads to almost impossible to control seizures, cerebral palsy, feeding difficulties, muscle weakness and global developmental delay. She is four but is confined to a wheelchair, has a feeding tube, limited function of her hands, and cannot talk. Our insurance has been helpful in simple needs, but the more complex needs are met with resistance or downright refusal. We were initially declined for a wheel chair because it was "a convience item" and didn't treat cerebral palsy! I also had to pay for our wheel chair van. It is not a nice van, but it serves our purpose. It was a deep financial blow to our family at $46,000. I personally would qualify for a new wheel chair every 30 thousand miles if I was disabled, but as my child, she does not qualify. Her lack of muscle tone makes transferring her to any seat very difficult. Insurance did not see ripping her feeding tube out while transferring her from wheel chair to car seat as sufficient enough medical necessity. And now she is in desperate need of a safe place to sleep. And once again insurance is not cooperating. Our first priority is a safer sleeping situation for her with the Sleep Safe Bed. Our family will face many more struggles in her lifetime, and fights for the equipment that she will need. Once we move to Florida, we will face having to modify a bathroom, a bedroom and perhaps even having to install a railing system in the house so that we can move her around. She is only 4, but she's already 50 pounds and growing. The oldest known person with her disability is forty one years old. Please help us where you can. We are trying to do the best we can for her. Putting her in some sort of group living, or nursing home is a thought we cannot even fathom.

$670

 

1% Raised of $80,000 Goal

  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  • Dee-Ann Butler

     

  • Wanda Renner

    $20

  • Rick NeCamp

    $25

  • Lee Lockhart

    $25

  • Palacios family from Tucson:)

    $40

  • Gramma & Grampa Reynolds

    $50

  • Ric & Deb Aiken

    $75

  • Anonymous

    $75

  • The Mulkey Family

    $25

  • Grogan family

    $50

  • Christine Teranto

    $50

  • The Young Family

    $25

  • $50

  • The N. Gourley family

    $50

  • Tony Alter

    $25

  • David Phillips

    $25

  • Lisa Phillips-Jahnke

    $50

  •  
  •  
  •  
Organized by

Emma Reynolds

This is a direct to organizer fundraiser.

Fundraise for this Campaign

The Team: $670 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Dee-Ann Butler

Amount Raised

$620

 

25% Raised of $2,500 Goal

Fundraiser Title

Emma Reynolds

Amount Raised

$50

 

0% Raised of $80,000 Goal

Fundraiser Title

Monty Douglas

Amount Raised

$0

Donor Comments

Lisa Phillips-Jahnke

Lisa Phillips-Jahnke

DONATION: $50

3 years ago

David Phillips

David Phillips

DONATION: $25

4 years ago

Tony Alter

Tony Alter

DONATION: $25

4 years ago

The N. Gourley family

The N. Gourley family

DONATION: $50

4 years ago

DONATION: $50

4 years ago

The Young Family

The Young Family

DONATION: $25

4 years ago

Christine Teranto

Christine Teranto

DONATION: $50

4 years ago

Grogan family

Grogan family

DONATION: $50

4 years ago

The Mulkey Family

The Mulkey Family

DONATION: $25

4 years ago

Anonymous

ANONYMOUS

DONATION: $75

4 years ago

Report this page — Let Us Know if you think this page is breaking the law or the CrowdRise Terms