Think about it, no one really knew what autism was unless you had a kid with it until Jenny Mc carthy (I hope I got her name right) wrote a book about it and went on tv shows. She stood up used her voice and spoke.
Its time we stand up!
Showing posts with label awareness. Show all posts
Showing posts with label awareness. Show all posts
Saturday, December 3, 2011
Education and Awareness
Some things get a lot of attention, that brings awareness and public education on medical conditions, you would otherwise never know about.
Think about it, no one really knew what autism was unless you had a kid with it until Jenny Mc carthy (I hope I got her name right) wrote a book about it and went on tv shows. She stood up used her voice and spoke.
Its time we stand up!
Think about it, no one really knew what autism was unless you had a kid with it until Jenny Mc carthy (I hope I got her name right) wrote a book about it and went on tv shows. She stood up used her voice and spoke.
Its time we stand up!
Saturday, November 5, 2011
Tuesday, April 12, 2011
The Unknown
There is so much I am still learning about nevi and how they become. I like so many fear the unknown, and most people have never heard of CMN the skin condition Haleigh has. And for most people myself included your don't start to learn things unless you have to. Before Haleigh was born there was no need for me to know all about CMN, or how it affects lives. But awareness is something I have come to realize is a must.
Last Friday there was a little 2 year old boy who died from a complication of CMN, not from surgery, but from tumors that can develop in the Central Nervus System. Have I know this is a complication of what Haleigh has? Yes, why have I not said anything before? Because what research I can find and believe me its not a lot, has shown that this complication is rare, and mostly seen in kids who have nevi on their spine and tops on the head. Also there is a link between children who are born with a lot of small nevi instead on the one large one Haleigh was born with. Since Haleigh is in neither of these groups I have tried to buy it in the back of my mind. The truth of the matter is though I should be making a voice for it, not hiding it away. We are raising funds for travel and should be raising more awareness than we are.
Words can not express the loss this family has endured, I hope we as a fellow nevus family member can shine a little light on awareness, and pull in some funds for more research on CMN and eventually have a cure.
Its scary to be in the unknown, to not know if your child will be in the very real % that has a serious complication from this skin disorder, or will we be among the ones that only worry about removal?. The research I have read seems to be that if we can get her to 13 years old with no complications including Cancers then she will be at no higher risk that anyone else. That is 10 and a half years away.
Last Friday there was a little 2 year old boy who died from a complication of CMN, not from surgery, but from tumors that can develop in the Central Nervus System. Have I know this is a complication of what Haleigh has? Yes, why have I not said anything before? Because what research I can find and believe me its not a lot, has shown that this complication is rare, and mostly seen in kids who have nevi on their spine and tops on the head. Also there is a link between children who are born with a lot of small nevi instead on the one large one Haleigh was born with. Since Haleigh is in neither of these groups I have tried to buy it in the back of my mind. The truth of the matter is though I should be making a voice for it, not hiding it away. We are raising funds for travel and should be raising more awareness than we are.
Its scary to be in the unknown, to not know if your child will be in the very real % that has a serious complication from this skin disorder, or will we be among the ones that only worry about removal?. The research I have read seems to be that if we can get her to 13 years old with no complications including Cancers then she will be at no higher risk that anyone else. That is 10 and a half years away.
Monday, February 21, 2011
2 weeks
In 2 weeks we will be in Atlanta. I am so excitedly scared! I think for the first surgery that is completely normal. I am sure 2 weeks from today when its the night before surgery my stomach will be in knots, I can only hope that after the 1st time things will be easier because I will know what's coming. I hate that she might know what's coming, I hope she will not fear going into surgery, that she will understand that everything is going to be OK.
I talked to the surgery center last week and they were very nice. I had to answer a health questions about Haleigh, they asked a lot of questions too! But I know its just to be careful and when it comes to babies you can not be too careful. I was also told that Haleigh can bring her stuffed animal and blanket with her into surgery, and that either Jason or I can go back with her and stay with her until she is asleep. That made me full better knowing I do not have to leave her crying. Once surgery is over we can both go back to recovery to see her and stay with her until we leave. They were nice and made sure I understood everything and have me a phone number to call if I thought of any questions.
On another note, I have also been asked if the local TV news channel can interview us. They are doing a story on the foundation and want to do a piece on Haleigh! Talk about getting the word out! I am sure the story will be out on the Internet and I will be able to post a link. Jason is not sure he want to do it, he for air does not want to talk on camera, speaking is not the easiest thing for me either, but I think I can do it, it will help other moms that may be sitting at home and not know where to turn someone who might not search for hours on end on the Internet hunting information. It will also help the foundation with funds, people will see Haleigh on TV and donate to them, that is awesome! I think Jason can just hold Haleigh while I talk, we'll see.
I talked to the surgery center last week and they were very nice. I had to answer a health questions about Haleigh, they asked a lot of questions too! But I know its just to be careful and when it comes to babies you can not be too careful. I was also told that Haleigh can bring her stuffed animal and blanket with her into surgery, and that either Jason or I can go back with her and stay with her until she is asleep. That made me full better knowing I do not have to leave her crying. Once surgery is over we can both go back to recovery to see her and stay with her until we leave. They were nice and made sure I understood everything and have me a phone number to call if I thought of any questions.
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