If you just learned or already know that your child has Hirschsprung's Disease, then let me welcome you to the millions of us out here that know what you are going through. Hirschsprung's Disease (HD) can be a very difficult and stressful disease for everybody involved. We are a tight knit group of families dealing with this disease and we need to know there are others out there dealing with the same issues we ourselves are going through. Whether you are a friend in the same state, a friend in a different state or even a friend in a different country, I personally am here to support whoever needs it. I know we could have used it six years ago (2007) when our son was born with HD.
In this site I will give basic HD facts and realities, but I will also give information about organ transplant and will also tell you our story with our son. It is very extensive and we have been through a lot with him and I want everyone out there to know about it. You may be thinking "Why is she so special that everyone should know their story". We arent special, but we have been through just about everything you can think of when it comes to HD, along with Transplant. I want people to know they are not alone when going through this, that there is support out there. And even if you don't think you need that support (like I thought), you do and it is helpful to have other HD families there. Whether you are just having a stressful day or there is something more serious happening, there are several of us who you can turn to 24/7.
There are no updated books out there to tell you about this disease. And only about 2% of information on the web is correct. My "mission" is to get this information out there to new families dealing with it along with others who have already gone through this. I am also trying everything possible to get this out in the public eye. This needs to be publicized as much as anything else like autism and breast cancer. We should have at least a day dedicated to Hirschsprung's Disease awareness. There should be fundraisers for it, walks for it, etc.... This can be a very serious and fatal disease yet the public does not know about it. Help me by getting this out there.
The picture is of an HD awareness logo I have created in hopes that we can all get on board with a HD Awareness Campaign and get this disease out in the public eye and get the attention it deserves.
In this site I will give basic HD facts and realities, but I will also give information about organ transplant and will also tell you our story with our son. It is very extensive and we have been through a lot with him and I want everyone out there to know about it. You may be thinking "Why is she so special that everyone should know their story". We arent special, but we have been through just about everything you can think of when it comes to HD, along with Transplant. I want people to know they are not alone when going through this, that there is support out there. And even if you don't think you need that support (like I thought), you do and it is helpful to have other HD families there. Whether you are just having a stressful day or there is something more serious happening, there are several of us who you can turn to 24/7.
There are no updated books out there to tell you about this disease. And only about 2% of information on the web is correct. My "mission" is to get this information out there to new families dealing with it along with others who have already gone through this. I am also trying everything possible to get this out in the public eye. This needs to be publicized as much as anything else like autism and breast cancer. We should have at least a day dedicated to Hirschsprung's Disease awareness. There should be fundraisers for it, walks for it, etc.... This can be a very serious and fatal disease yet the public does not know about it. Help me by getting this out there.
The picture is of an HD awareness logo I have created in hopes that we can all get on board with a HD Awareness Campaign and get this disease out in the public eye and get the attention it deserves.
