Hello! I am the mother to Amelia who was diagnosed with WHS at two days old. I live in New Jersey with my husband, and two other children, Joey and Nathan. I am a teacher and my husband is a real estate agent. All of the information I have ever learned about WHS has come from other parents so I am excited that I can follow this blog and the other parents on here. I try to read most of the blogs by other WHS parents but rarely have time to comment and I never would have time to set one up for myself.
Amelia recently turned two on March 4th. She can not sit on her own yet but is really trying. She can roll around on the floor and move to where she wants to go. Her first tooth came through two weeks ago and I can feel more on their way. She is fed by g-tube but will allow some food in her mouth to taste different things. For the most part, she is very pleasant and only cries when she is sick. Amelia does have seizures but we have been seizure free for five months! Looking forward to reading all of your stories about your beautiful children!
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Is there any site to donate money to? Is there a petition to sign to get her the transplant?
Donations are being accepted through Paypal by using admin@wolfhirschhorn.org as the email address to pay to. Thanks!