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.
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