Zane is the new featured Hero on Sierra Rayn Foundation Page

Go read Zane’s story and see his cute face on this page: http://www.sierrarayn.org/little-hero-zane-leland-madaus/ The Sierra Rayn Foundation helps families with Neuroblastoma, it was founded by Sierra’s mother, a little girl who sadly passed away from Neuroblastoma and you can read their story on the page as well.

He also has his story upcoming in a newspaper for Cool Kids Campaign that is sent out to cancer centers across the country to bring hope to young fighters and their families.

We are working hard at fundraising for Costello Syndrome Family Network to earn our registration for the Costello Medical Conference in Florida this summer.  So far we were able to buy our airfare tickets for the whole family!  We have lots of fun things planned and lots of medical things planned as well!

You can find our online shopping parties that benefit CSFN for the Florida conference here: https://www.facebook.com/notes/campaign-zane/zanes-fundraising-events-for-costello-syndrome-family-network/160899540728219

Zane is currently on his 5th !! hospital stay in his 7 1/2 months of life so far… He is in for respiratory after catching the common cold.  He really scared us this time as we woke up to see him blue and nearly unresponsive.  With the help of our amazing doctors we were able to get him on oxygen fast, his blood sugar had also dropped to 40 and we were worried his heart was failing.  He is doing well now though, sitting and playing with toys, happy as can BE! He is such a tough kid!  we love him so much!   Keep praying !  Let God know how much the whole world loves him!

For everyone local in the Milwaukee area we do have a craft fair at Frank Lloyd Wright on May 11th if you’d like to stop by and meet Zane, check out our craft table and participate in a raffle… all things benefitting his trip to see COSTELLO researchers in Florida (we have not met doctors or researchers who know a lot about Costello yet so this will be BIG for us)

If you didn’t get a chance to read how our Mayo Clinic trip went in Minnesota… there is a tab at the top of the page you can click so please read the latest news there as well.

Thank You Thank You Thank You to everyone who keeps donating and praying and sharing his story, thinking of us, for leaving us a kind note… every single one of you is so important to us!  Thank you!

Here is Zane on Easter: (he got a new light up rattle and handmade quilt (quilt was sent to us from Lacey’s Love)

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AND HIS NEW GLASSES!  arent they cute??

craftfair

P.S.  I am feeling INSPIRED and am working on an E Book Or possibly published book…  I will probably include our loss story of our twin daughters, Anna and Claire, along with Zane’s story.  It will probably take a long time but I hope you all will read it when that day comes where it is done! 🙂

 

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4 responses to “Zane is the new featured Hero on Sierra Rayn Foundation Page

    • Orlando!! Across the street from sea world. I am so concerned about zane handling the heat there but we do have big plans for everyone

  1. I must say that it is wonderful to read this. I just found out that my baby has Costello Syndrom and I found this website searching for answers. It helps so much to hear your positive thinking:)
    It is so weard to be dealing with a desease that none of the doctors have heard about. I hope I can find these croups so i can talk to someone about this.
    Maybe I’ll see you next year in Florida 🙂

    • Elisabet- please email me sklipstein@wi.rr.com or find me on facebook “Shannon Klipstein” and I can help you get in touch with everyone if you haven’t already done so. Otherwise sign up for the email listserv on the costello kids website! Would love to get to know you and possibly meet you at the next conference!

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