The Rainbow Challenge

THE RAINBOW CHALLENGE!

Here is how to play:

1.    Take your photo with a Rainbow, you can use Reed’s rainbow attached to this post or Chloe’s Rainbow or both, it can also be found to download on the Reed’s Blog, or just draw one!

2.    Post the pic on Facebook, using #TeamReed #SavingReedandChloe ‪#‎SavingChloeSaxby #VWMRainbowChallenge, ‪#‎Findacureforvwm ‪#‎RainbowChallenge if you would like we would love for you to tag the Team Reed Page also, and tell us where you are located!

3.    Then donate $5 at https://www.crowdrise.com/findacureforvwm/fundraiser/erikamealhowhavlik or  http://www.savingchloesaxby.com 

4.    Tag & Nominate 5 of your friends for The Rainbow Challenge so we can spread the rainbow around the world

5.    Copy & Paste the above instructions for the next person

#TeamReed #SavingReedandChloe ‪#‎SavingChloeSaxby #VWMRainbowChallenge, ‪#‎Findacureforvwm ‪#‎RainbowChallenge

Note: don’t have a way to print the rainbow, that’s okay you someone else’s phone or tablet to pull it up or just any picture of a rainbow and take a picture with that.

Don’t need to be tagged to participate J the more the merrier, don’t forget to copy this text and include it with your picture and donate!!

Jesup boy has rare brain disease

For the full article please visit here, it was such a well written article we couldn't be happier with how it turned out!

KWWL News

KWWL - Eastern Iowa Breaking News, Weather, Closings

Imagine being told your child has a rare disease that will eventually kill them and there is nothing you can do it to change it.

It is a terrifying reality for one Eastern Iowa family.

Three year old Reed is one of less than 200 people in the world who have have Vanishing White Matter disease.
Its a terminal brain disease that slowly eats away at the brain and spinal cord.

 "Hopefully save our son and find a cure for him," said Reed's mom, Erika Havlik.

 A year ago, Reed was a healthy toddler, now he is no longer able to walk on his own.
 Just the first of many detrimental effects the disease will have in the next few years.
 "Eventually he could lose his eye sight, his ability to swallow and chew. . .then seizures and then possibly organ failure. We just don't know when any of that will happen," said Havlik.

 It is the not knowing and not being able to help their son that is so hard for Erika and her husband.
"It got to a point where we were jealous of families with kids with cancer at some points. Because at least they have hope, treatments, and cure possibilities. Which is a hard thing to grasp; you would never wish that on anyone, but when you haven nothing to even hope for, in terms of a cure or treatment, you are just waiting for the next day. What are you supposed to do?" said Havlik.

For now they take it day by day and appreciating the little moments; knowing many of the dreams they had for Reed won't ever come true.
"With a life expectancy of 10 years old, I mean, what hopes do you have for your child, dances, girlfriends, friends, proms, sports; all those things," said Havlik.

 There is no cure or treatment for Vanishing White Matter disease.
 Reed receives speech and occupational therapy, but it will not prevent the disease from progressing.

Erika and her husband are doing all they can to raise money for research on the disease.

They will be holding  a Team Reed 5k Glow Run on May 13^th  and the 2^nd Annual Team Reed Golf Classic on June 11th.

http://www.kwwl.com/story/31421272/2016/03/08/local-toddler-living-with-rare-terminal-brain-disease#?autoStart=true&topVideoCatNo=default&clipId=12271593