Life as a parent of a child with Wolf Hirschhorn Syndrome.wmv

[ltetobago]

My daughter has WHS and is 12yrs old...scary at first but God will bless you :)

[xarisetsi7]

i wish the best for your son..! i've met a girl with WHS she is amazing and always with a smile in her face..! give all your love, they deserve it...

greece

[Bobeninge129]

It's if I'm looking to my own life the last 6 months. The 4 of may our beautiful daughter is born, Anne with WHS. How you describe everything.....it's if I wrote it by myself. Tears here in the Netherlands when I saw your beautiful video.

We've got allready one son, he is healthy and very sweet to his sister.

Thank you for sharing this.

Inge de Nijs (Netherlands)

[fearlesspiggy]

Thankyou so much. This brought me to tears. Everything is so true. My 18 month old was diagnosed 5 months ago with WHS. It's been such a weird time but she makes me so happy everyday and I love her so much.

[mowerkri]

@fearlesspiggy - Have you reached out for support? Have you contacted the National Support group? There are many many of us who are connected.  If you e-mail me, I can possibly help you to connect with other parents.. and you are right. I love Alexander with every fiber of my being.

[lornawolf]

this made me cry because i lost my daughter lorna at nine months of age to WHS in 1989 xx

[AmelMaryame]

Very beautiful my friend...

I've lost my little girl at birth...I didn't loose my WHS 's child or WHS...

I've only lost my child.

Thanks to you, it's exactly what I felt and what I still feel...

I wish you the best

[mowerkri]

@AmelMaryame - Please know how moved I am that this video touched you. I can't even think of the words to tell you. When I made this video, I thought I was making it for myself... but now I think I might have been making it for all of us. I will pray that both our hearts can have healing.

[LyrahLane]

Thank you for posting this. I am a teacher of students with special needs. We've had a young man with Wolf Hirshhorn Syndrome in our class. He's a real character, and we love him very much. He's 18 now and doing great. A fascinating young man who charms everyone he meets. We had him as a middle school student, and now he's a friend of the family.

As long as your child has a supportive family and love, he'll be just fine. God bless.