I’ve been trying to explain what this website is to my friends and family. As I encourage them to come here and read our stories, I find myself attempting to describe why this website is different.
This website is HOPE.
I don’t really care about genetics. My child is more than one number on one chromosome. There are environmental factors, other genes, new technologies, and a myriad of other influences that help to shape my child’s development every day. Other groups, websites, and pages focus on the genetics of life. This website does not.
When so much attention is put into those efforts… most of the information starts with, “your child will not.” This website is built firmly on the principal of “Our Children Will.”
I’m thrilled to be a part of this “competition.” Even if my child does not win – I’m overjoyed by how much traffic has come to this site. We all know that search engines like Google and Yahoo use a website’s popularity as a factor in determining the rank of a website.
For too long – websites with outdated data and pessimistic attitudes were touted as the authority because they were ranked first.
As a group, we should continue to encourage people to use this website as a resource for learning about our rare syndrome. Maybe then, a mother won’t be so devastated when she learns the news. Maybe then, a doctor will offer a positive and realistic outlook for what life with our children is like.
Our Parent Run Website is HOPE. And HOPE can go a long way.
7 Responses to Hope
Leave a Reply
Donate to wolfhirschhorn.org
subscribe
Contribute Your Story
To share your story, create your LOGIN and sign in once you receive your password via email. After logging in, write your story, upload pictures and publish your story! It's that easy. If you would like to comment on our stories, you can comment without creating a login. Each comment is posted once approved. If you need help, please email us.WHS Growth Chart
In 2007, a WHS growth chart was created. Download the Wolf-Hirschhorn Syndrome Growth Chart here.Most Popular Topics
1st Birthday 2011 Easter Birthday contest results Dentist development Doctor Visits Early Intervention eating family feeding Feeding Tube food Fund Raiser Halloween Halloween 2011 Halloween Contest Holiday Hospital introduction IQ Kidney Transplant kidney ultrasound Magnolia milestones Nayana Parent Profile physical therapy pictures School scooting Seizures Siblings Sitting Position Social Media Special Needs Speech Therapy talking Therapy Top 10 List Unborn Child update video Walking Weight GainSelect Your Story
- Addilynn (2)
- Alexander (9)
- Alexia (2)
- Ali (1)
- Amelia (23)
- Ansel (1)
- Arianna (2)
- Arin Rae (16)
- Ava Lynn (8)
- Ava Ruby (1)
- Bethany (2)
- Blake (3)
- Brett (2)
- Brodie (15)
- Caroline (9)
- Casen (1)
- Cassidy Renee (2)
- Charity (1)
- Charlotte Ellen (1)
- Claire (3)
- Clover (3)
- Contest (19)
- Corrine (1)
- Corwin (2)
- Dakota (1)
- DeLaney (1)
- Deliany (1)
- Denise (3)
- Devin (3)
- Dylan (16)
- Elijah (4)
- Ellye (3)
- Elsa (32)
- Emily Rose (5)
- Emma (7)
- Esme (3)
- Esperanza (2)
- Evan (2)
- Eve (3)
- Evelina (1)
- Evvie (2)
- Featured Stories (14)
- Fiona (4)
- Frank (6)
- Fund Raiser (13)
- Garner (1)
- General Information (23)
- Giveaway (3)
- Grace (5)
- Halloween (28)
- Harry (1)
- Hayden (2)
- Isabella (4)
- Isabella N (6)
- Jaap (1)
- Jada (2)
- Jake (1)
- James Douglas (2)
- Jon York (1)
- Joseph (1)
- Juliana (2)
- Justin (1)
- Karly (4)
- Karson (2)
- Kaylee (13)
- Kayleen (1)
- Kendall (82)
- Kinga (2)
- Leo (2)
- Liam (7)
- Liam John (1)
- Lisa (3)
- Lists (2)
- Lucy (1)
- Madison (7)
- Magnolia (7)
- Marley (2)
- Marshall (1)
- Mason (3)
- Matilda (1)
- McKenzie (6)
- Mia Rose (27)
- Natalie (1)
- Nathan (1)
- Nathaniel (28)
- Nayana (3)
- News (3)
- Norrah (18)
- Olivia (1)
- Olivia Grace (6)
- Olivia Stella (1)
- Paisley (1)
- Parent Profile (2)
- Peyton (4)
- Quinn (2)
- Reese (1)
- Region Gatherings (2)
- Renee (1)
- Rheyn (6)
- Riley (6)
- Rochelle (3)
- Ryley (2)
- Sabrina (10)
- Savannah (1)
- Sergio (2)
- Shadyn (1)
- Social Media (10)
- Sophia (6)
- Talia (2)
- Talon (1)
- Tanner (13)
- Taylor (10)
- Taylor T (3)
- Teejay (4)
- Tommy (2)
- Tyler James (5)
- Tyler Jay (1)
- Unborn Child (7)
- Uncategorized (128)
- Vincent (1)
Google Ads 1
Google Ads 2
Google Ads 3
This is so accurate and simply written. I totally agree. This site is amazing and I’m so happy that it’s becoming more popular and used as a resource for the doctors. Great post:)
Great post…I agree with your post. Without this site, there is little hope on other sites for our families and children.
Well said.
This is so true, the medical community is full of “defeatist” messages and I’m so glad to be a part of this blog where we reject those messages. Our geneticist is always saying about Brodie “this is not what we expected to see.”. And I always think, “ya good thing we didn’t listen to you and let the syndrome defeat our hopeful attitude about Brodie’s development.”
I wish this was the first website I would have came across the first time I looked up Wolf-Hirschhorn Syndrome. Thanks to all the families who are a part of making this website so great!
Love this. I can’t tell you how much hope this website has given me last several of months. Ava was born less than seven short weeks ago and already we are joyful over the progress she has made and will make in the future. I’m thankful to all who have shared their encouraging stories!
I agree 100%. I wish I had found this website when Nathaniel was diagnosed. I stressed and cried about a million times….then I found this site and had a huge sense of hope. Thank you to all who have helped me in more ways than one. Keep posting comments and blogs. God Bless you all!