The story of KRISTA
I will never forget the day our daughter was diagnosed with Chiari Malformation – July 3, 2013. We had never heard of it – and our pediatrician had only ever heard of it, she had no experience with it. So, she googled it for us and read for us what she found. Her best advice for us, while we waited to see a Neurosurgeon, was to go home and google it some more and look for relaible websites. We had so many questions and no answers. So, we began researching. Where was the Canadian publications, where were the Canadian support groups? I felt like we were alone and in the dark. Our first trip to the Neurosurgery Clinic I ran right over to the wall with all of the brochures and booklets on all of the Neurolocial disorders – MS, Epilepsy, so many more but where was Chiari. Nothing…. Our Neurosurgeon seemed positive, he could help and she could get better. There may be some neurolocal damage, we couldn’t be sure until after surgery but he could decompress her to stop further progression of her conditon. After 2 decompression surgeries – craniotomy, laminectomy and duraplasty – the MRI’s still were not good. There still was not sufficient space for spinal fluid flow around her brain and she was still symptomatic. Her condition was worse than originally anticipated due to her brainstem being too low – which is, also, rare. We kept hearing “We don’t know why this is happening” and “This isn’t the typical outcome”. I felt like we were traveling down a dark tunnel with no end in sight. Now, we wait… wait as long as we can until the day we can’t wait anymore and we take the chance with a 3rd, more serious surgery. Her NS is sure it will work – but will it? We’ve heard that before. This condition is so complex, that no two cases are alike – so how do we get the answers we need? How do we make a decision like this and keep going down this path of treatment when we don’t know whats going to happen. The most difficult thing about having a child with a Rare Disease is the lack of information, the lack of knowledge and understanding of the conditon, all of the unknowns about the conditon, the lack of awarness and support, and this feeling of being alone.
My heart goes out to everyone with a rare disease and to all of the parents who have children living with a rare disease.