Mission Statement
From Holoprosencephaly
Holoprosencephaly.net Mission Statement
This website was created by parents of children with HPE to offer information, resources, and ways to get the support needed when coping with the new diagnosis or daily concerns of living with a child with HPE.
Our intention is only to provide information under one "umbrella" about different things that concern parents of children with HPE.
We are not doctors and our intention is not to give you medical advice.
The fact that we are presenting all of this information does not mean that your child will develop all of these problems. Our mission is not to scare you or to make you believe that your child will at some point have or develop some or all of these problems. We just want to help you, so if you do have a problem, you will have easy access to information and possible treatment ideas to help your child.
HPE is a complex disorder that can affect children in many ways. We have simply tried to compile and present information that would be helpful for as many families of children with HPE as possible, from the most severely affected kids to the most mildly affected.
Simply, we understand the roller coaster that it is trying to find the right information, to understand information given to us by doctors, the difficulty in trying to decode the medical jargon to understand, "What does this mean for my child? For my family? How can I help my child"?
THIS WEBSITE IS FOR PARENTS BY PARENTS. WE WANT THIS TO BE HELPFUL TO YOU AND YOUR FAMILY.
Please feel free to contribute advice, information, resources that you have found helpful.
If we all work together we can create a vast, extensive knowledge base of information that can help families of children with HPE throughout the world. We don't have to spend hours and hours trying to find the info, trying to understand what everything means, trying to steal moments from doctors to explain what things mean. Instead we can help each other and create a resource that can help everyone.
We have been through the pain of hearing the diagnosis. We have spent hundreds of hours scouring the web, trying to understand every little piece of information we can garner from doctors. We have spent so much time looking online to find one favorable definition of HPE, one that gives hope.
We hope that through this website, we can provide information that can help your family have hope, that can help you see the child in front of you, not the child the doctors are telling you that you will have. We hope this will bring you peace and the ability to help and enjoy your child more thoroughly.
Don't hesitate to let us know if you have any suggestions, ideas, information, or resources you would like to share with us.
Thank you.
