Our Journey with Chiari

We started this fundraising a few months ago to raise funds to take my 4 year old triplet daughters to Michigan to see Dr. Holly Gilmer which we took them on September 30, 2014.  We were so blessed to have received $1,141 in donations for our trip to Michigan to see Dr Holly Gilmer. All your donations helped us so much during our trip. We now start a new step in our journey as we prepare for brain surgery for all three girls in Michigan. I unfortunately cannot reset the donations to truly reflect what we have but at this time we have $320.00 already raised. Thank you all and I will keep you updated on the raised amount. Thank you so much!!!

My girls have been my miracles since the beginning and although odds were against us we managed to pull through and my girls are here with us today. Our story is long and I wish there was an easier way to explain everything that they have gone through. We have worked very hard to be developmentally where we are at now. We have been conquering many diagnosis and although we thought that we had finally grasp and understood all of the girls diagnosis we were recently shaken again with a new diagnosis. On January 30, 2014 we took my daughter Izabelle in for a Brain MRI we were called the same day with the diagnosis of Arnold-Chiari Malformation. We had never heard of this disorder and the pediatrician said she wasn't able to explain a lot and advised us to take her to a neurosurgeon. We immediately researched information online and found some information on support groups and specialists on other states but not much in Arizona. We took her to a neurosurgeon in Phoenix AZ who recommended she have surgery called posterior fossa decompression surgery with a C1 and C2 laminectomy. She was had this surgery on March 3, 2014. On March 28, 2014 we took Edith in for a Brain and Spine MRI and were told she too has Arnold Chiari Malformation and has Syringomylenia (which means she has a syrinx which is a fluid filled cyst in her cervical spine). She had her posterior fossa decompression surgery with a C1 and C2 laminectomy on June 12, 2014. On July 21, 2014 Izabelle had a post surgical brain MRI to evaluate progress and at the same time Adlette had her brain MRI to rule out Chiari. On July 29, 2014 we were told that Adlette too has Arnold Chiari Malformation but seems that she has good fluid flow and doesn't look like she needs surgery. We were additionally told that Izabelle's surgery wasn't as successful as we had hoped and will need a second surgery where the dura (outer lining of the brain) will be opened and bovine (cow) tissue will be used to create more space for fluid flow. With this surgery there are many risks that are very scary such as fluid leaks, meningitis and so on.

After our appointment with Dr Gilmer (9/30/14) we have been told that all three girls will need brain surgery to restore fluid flow. 

For more information please visit us at
https://www.facebook.com/Izabelleandedithtougherthanchiari


If you are able to donate directly at Wells Fargo this is the account number.

Account number: 78[phone redacted]5
Chiari Warriors Medical Donations
  • Jonna Rasner 
    • $50 
    • 73 mos
  • Anonymous 
    • $25 
    • 80 mos
  • Pamela Pauley 
    • $75 
    • 80 mos
  • Anonymous 
    • $99 
    • 80 mos
  • Anonymous 
    • $50 
    • 80 mos
See all

Organizer

Isabel Ramirez 
Organizer
Phoenix, AZ
  • #1 fundraising platform

    More people start fundraisers on GoFundMe than on any other platform. Learn more

  • GoFundMe Guarantee

    In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more

  • Expert advice, 24/7

    Contact us with your questions and we’ll answer, day or night. Learn more