Hemophilia? What's that!?
  Keyan is nine years old. He was born with hemophilia. We didn't know that though. We questioned doctors, what is wrong with him? Nothing, they told us over and over. After falling from his walker at 7 months old, he fractured his skull and started to bleed into his brain. The hospital E.R.  told us he was fine, even though he had, not just a bump, but a swollen spongey mass on the side of his small head, the size of a cut-in-half grapefruit. Normal, you say? Well, they were doctors, right? They told me those little things that looked like cracks were merely 'sutures', where his head was continually growing...believe me, I pointed them out and ask what they were. Ok. It took weeks for the painful swelling of his head to go down. He cried at the slightest touch. But it was 'normal.'
   At the age of 9 months old, he was walking under the kitchen table, cruising from chair to chair. Plop! Down on his little bum he went. He bumped the back of his head, but he barely fussed about it.  By the next morning, the side of his head was starting to swell again. This is NOT normal, I told myself. I phoned my mother. She knows what kind of injuries kids get. No, it is NOT normal. She and I took Keyan to a more local, very small hospital. They had a total of two rooms in the E.R. More of a band-aid station. Before even signing all that paper work, I wanted to simply know from a doctor if it was normal for a wee babes head to swell. No! No! No! They rushed him in, did blood work...hhmmm...odd, his blood isn't clotting properly. Does he have a bleeding disorder, they ask me. "Miss, he has a fractured skull. But you say he hit the 'back' of his head?" He was hurried to the further away Children's hospital, where he was diagnosed with two hair line fractures. And hemophilia B, Factor IX (9) deficiency, Christmas disease. Oh, and the CT scan shows that he has bled into his brain, via those 'sutures.' He should have died.... a 10% chance of living, considering it had went on THIS long, and reoccurred. His Aunt Michelle is hear, in spirit, watching over him. I knew it. I felt her.    And that is the day I started researching and trying to deal with our news. Here are just a few of the links I visited on my journey of hemophilia knowledge.  Oh, the stories we have to tell...they are many and miraculous.
Hemophilia Village
FamOhio
World Federation of Hemophilia
Simple Explanation
Northern Ohio Hemophilia Foundation
Coalition for Hemophilia B
Hosted by www.Geocities.ws

1