Strollathon
  • Event Home
  • About
    • Event Details
    • FAQ
    • Marketing Assets
    • Contact
  • Register
  • Donate
  • Sponsor

Welcome to Katie's Purple Toes & Hair for Daddy Campaign !!!

Donate Now
Lily and mom visiting my UF Dorm Room!
Lily and mom visiting my UF Dorm Room!

Thank you for visiting Katie's Purple Toes & Hair for Daddy Campaign !!! And thanks to all of our wonderful family and friends for your generous support every year. You help make us one of the top 10 fundraising Strollathon teams in the nation every year. We are honored to have your support!


We are going to try and do it again this year for the 12th Annual Florida Strollathon, Rettsyndrome.org’s signature fundraising and awareness event to raise money for essential research of effective treatments and to find a cure for Rett syndrome. We have never reached $30,000 but with your help we will ! We came close last year.  This year’s event will be held Saturday, October 31st, 2020 in the safety of your home with your angels, family and bubble friends!

 


Below dad tell you his story. This is mine!  I  am Lily's little sister and I love her. She is the sweets girl in the whole world my best friend and the Rett Monster does not stop us from having fun! I am driving now so we can go places together without mom and Dad.  Since 2014 dad has been letting me paint his toes purple if a reached a certin goal and then we added dying his hair a couple of years ago. 


So my goals are Toes $3,000 and Hair $5,000.  Please help me paint dad purple again! 

Love, Katie 

 

Imagine having a beautiful little girl who develops normally for almost 2 years... talking, playing with toys & books, finger-feeding herself, etc. only to regress and lose all her verbal, social and fine motor skills in a matter of months. All your hopes & dreams of having a normal, healthy daughter are suddenly dashed as you are told she has Rett Syndrome.


Rett Syndrome is a genetic neurological disorder that is not normally inherited. It is essentially a new mutation each time it occurs and becomes apparent after 6-18 months of early normal development. Every child with Rett Syndrome is different and has a unique combination of issues, but the resulting regression leads to lifelong impairments, including lost speech and purposeful use of their hands, seizures, scoliosis, breathing problems, sleep disturbances, anxiety, feeding tubes, and more than half of the children and women lose the ability to walk. Those diagnosed with Rett Syndrome require maximum assistance with basic daily activities for the rest of their lives.

Sadly, the above is one of the better outcomes that can be expected, as too many of our young girls and boys earn their wings to heaven each year. The past couple of years have been especially hard with so many lost, including the passing of one of our own beautiful, special girls from Florida, Skylar Proffitt (16).


Rett Syndrome affects primarily females (there are rare cases of males with Rett Syndrome), and its symptoms are devastating. Imagine the symptoms of autism, cerebral palsy, epilepsy and anxiety disorder affecting one child who cannot speak… this is Rett Syndrome!


But there is also great hope. With over $50M invested to date in research to find a cure, 32 active research studies and several ongoing clinical trials, tremendous progress is being made. Rett Syndrome has been shown to be reversible in a lab setting with mice, and scientists have since been exploring many avenues to make this a reality for Lily and other girls and boys.


Our daughter Lily, soon 24 years old was diagnosed with Rett Syndrome when she was 2 years old. We had just brought her from China and moved to Florida a year earlier. Most of our friends and support was in Georgia and we struggled when we were told our daughter would never talk or even have any expressive or receptive language; told that she had a high probablity of passing before she turned 10. Those were very difficult times for us but having an organization like Rettsydrome.org really helped us get through that rough period by educating and supporting us, and by simply letting us know that we were not alone! Rettsyndrome.org is contributing to research scientists around the world that have made incredible progress--first, in finding the cause of Rett Syndrome, and hopefully soon in developing a cure.

We are certain that a cure will happen in Lily's lifetime, but not without the generous support of people like you. You can save her and thousands of other girls and boys around the world.


Time is of the essence. Please donate today to help Lily and the many other girls and boys living with this devastating disorder. No amount is too small. Your support will mean so much to us. We appreciate your time, consideration and help as we fight for a cure for Rett syndrome. Your help is our hope! Thank You!


*Questions/problems donating, please call Henry at any time: 561-889-5610 

 

View More
Donate Now
Lily's Warriors
Achievements
TeamRaiser Achievement Badge
$1000 Milestone
Raised the amount of money defined for this milestone
TeamRaiser Achievement Badge
Personal Gift
Has made a donation to this event
Personal Progress:
of Goal
$5,002 Raised
$5,000.00
Fundraising Honor Roll
AMITABH S DUTTA
Bev Ladda & family
$26
Chapple Corporation
$500
Cory & Donna Klerk
$52
Diana Siebert
$52
Don, Chris, and Julie P.
$100
Doug and Julie
$250
Edmon Duncan
$260
Guillermo Perez
$260
Howard Kendall
$75
Jeffery C Ivey
$260
Katie Perez
$59
Kim & Marty
$500
Linda Hammett Ory
$1,000
Macy Family
Mary Morton
$100
Missy and Becki Chapman
$50
Mr. S. Garland Riner
$104
Pere Family Match - Generous Friends & M'Ville Family Thank You!
$1,000
RIDI PEREZ AND FAMILY
$52
Siobhan Barfield
$26
  • About
  • Donations

Comments

Donations for Katie Perez

DONORS
AMITABH S DUTTA
Bev Ladda & family
$26
Chapple Corporation
$500
Cory & Donna Klerk
$52
Diana Siebert
$52
Don, Chris, and Julie P.
$100
Doug and Julie
$250
Edmon Duncan
$260
Guillermo Perez
$260
Howard Kendall
$75
Jeffery C Ivey
$260
Katie Perez
$59
Kim & Marty
$500
Linda Hammett Ory
$1,000
Macy Family
Mary Morton
$100
Missy and Becki Chapman
$50
Mr. S. Garland Riner
$104
Pere Family Match - Generous Friends & M'Ville Family Thank You!
$1,000
RIDI PEREZ AND FAMILY
$52
Siobhan Barfield
$26
DONORS
AMITABH S DUTTA
Bev Ladda & family
1 donations
Chapple Corporation
1 donations
Cory & Donna Klerk
1 donations
Diana Siebert
1 donations
Don, Chris, and Julie P.
1 donations
Doug and Julie
1 donations
Edmon Duncan
1 donations
Guillermo Perez
1 donations
Howard Kendall
1 donations
Jeffery C Ivey
1 donations
Katie Perez
1 donations
Kim & Marty
1 donations
Linda Hammett Ory
1 donations
Macy Family
Mary Morton
1 donations
Missy and Becki Chapman
1 donations
Mr. S. Garland Riner
1 donations
Pere Family Match - Generous Friends & M'Ville Family Thank You!
1 donations
RIDI PEREZ AND FAMILY
1 donations
Siobhan Barfield
1 donations

If you think this page contains objectionable content, please inform the system administrator.

4600 Devitt Drive, Cincinnati, OH 45246 | © 2022 International Rett Syndrome Foundation, All Rights Reserved

Rettsyndrome.org

Login

Your login information was incorrect. Please try again or click here to have your information emailed to you.

User Login

 

New User?
Trouble signing in?


Forgot Username or Password?