Members Testimonials

Testimonials may be sent to: This e-mail address is being protected from spambots. You need JavaScript enabled to view it . MANY THANKS TO CHIARI'S ANGELS!! Hello fellow Chiarians (and those who love a fellow Chiarian) I just wanted to take the time and send out sincere thanks to the Chiari 's Angels Foundation! I have chiari 1, and was decompressed 3/07. I am also the mother of 4 children. I didn't know I had Chiari until after the first 3 babies, so only until recently has it become a concern for my children. My youngest Brendan is having some issues that I am concerned about. Brendan is 11 months old and refuses to roll over from his back to his stomach. Instead, he'll attempt to do a sit-up in order to get off of his back. Most babies roll over at 4 months. My son is like a turtle.. You sit him on his back and he's stuck! He'll cry until you sit him up. My husband and I have tried to help show him how to roll over.When ever you try and assist him, Brendan will lock his arms out, spread his hands open palms down and scream! He's absolutely terrified. The look on his face is nothing but fear as if he's falling. Just the slightest movement to his side causes him to behave this way. Keep in mind, my son is 11 months old. He's crawling (like a tripod.. its rather cute!), feeds himself and stands up and is cruising furniture. Developmentally, he appears to be with his age group. My Pediatrician is stumped. She has no clue what would cause this type if issue and she found it to be disturbing to see him act this way. I was beside myself when the Dr. suggested I saw a neurologist. I felt so alone, even though I had friends and family by my side to say everything was going to be ok. Not knowing what to do other than wait for a referral, I contacted Chiari's Angels Foundation executive director, Jeff Domenic. It was great to have someone who has such a network of fellow Chiarians and also quite a resource full of Neurologist's and Neurosurgeons! It's difficult being a military family and finding "good" providers, but a specialist is even more of a task! Within minutes of contacting Jeff, The Chiari's Angels Foundation was on the ball! They contacted the Neuro in my area on my behalf! I don't have to worry if this provider is familiar with our very rare condition or if he is experienced enough to take my concerns seriously! I have my son's Dr. working on the referral to Dr. Tulipan. Dr. Tulipan is already familiar with my son's issues because of Chiari's Angels taking the time to assist my family.Thanks Chiari's Angels Foundation!!! You guys have really been fantastic! If anyone else has a baby who has been diagnosed with Chiari, I would love to know of some symptoms. Any help you can offer is greatly appreciated! Michelle B. Nashville TN Maddy was born with congenital hydrocephalus in 2002 and was shunted at birth. In 2007 she started have a lot of headaches, nausea, vomiting etc. They did an MRI in October 2007 and saw that Maddy had Chiari type 1. She was decompressed on October 29,2007. The neurosurgeon removed some bone and made some room for her brain. He didn't place a patch. She has been symptom free since the surgery.  Jeff Domenic, the founder of Chiari's Angels found me on some Chiari message boards on yahoo. He and his foundation have been very helpful and supportive.  He has offered to give me names of specialists that can help Maddy. I am so thankful for Chiaris Angels they have been a source of strength for me and Maddy. It is wonderful to have a organization that can help so many people who suffer with Chiari. Thank you again so much for all the encouragement and prayers. Carrie E. mom to Madelyn E. Fresno,CA