Cora is our amazing, sweet, slightly stubborn and extremely loving 6-year old daughter who was born with Macrocephaly-Capillary Malformation. M-CM is a very rare multiple-malformation syndrome causing body and head overgrowth and abnormalities of the skin, vascular system, brain and limbs.
Cora started having seizures at 5 months. Her first seizure happened in her sleep (common for her) and was a status seizure. For the next 2 ½ years Cora was put on 7 different seizure medications/combinations in attempts to get control. Her worst days consisted of 30-50 drop seizures, tonic-clonics, rectal Diastat, and ER trips due to status seizures. A few months before her 3rd birthday, Cora’s seizures increased dramatically. None of the medications worked and she was in status for several weeks. We were told our only option was brain surgery as there was “no time” to try other options.
In October 2009, Cora had a right-sided hemispherectomy and corpus-callosotomy . She went from sitting and eating pureed veggies to only g-tube fed and unable to sit. We were hopeful that the surgery would finally give some seizure control so it was devastating when 3 months later, we started seeing quickly-increasing focal and tonic seizures from the left side of her brain. We started looking at other options that we weren’t able to try prior to surgery.
Five months post surgery, Cora started on the Ketogenic diet. We have seen the best control with the diet and she has come a long way in the last 3 ½ years. However, due to the M-CM, she has many challenges. She had double hip surgery, which was only half successful and still causes a lot of pain. She is still g-tube fed, on several seizure meds and on the Ketogenic diet. We are hoping to eventually wean her off all pharmaceuticals, the diet, and alleviate pain with the use of cannabis.
Cora recently started using a communication-device by means of a head switch. It has been nothing short of miraculous to see her personality finally able to be expressed! She loves playing on her iPad, watching videos, swinging, and going for rides in her wheelchair. We have just begun to see what she is capable of. She has been through so much and yet she is a happy girl and gives our family such sweet unconditional love.
Since learning about cannabis, we can’t help but wonder if it would have been an option for us four years ago, perhaps surgery could have been avoided. We’ll never know, and of course we can’t live in the “what ifs”, but we are so excited to start on this new journey right now, and for what the future will bring for Cora!