Hearing the diagnosis of a genetic disorder for your child is a lonely place to be.
Lonely, because you’re told very few children or adults have the disorder.
Lonely, because you’re told there is very little information on the particular disorder.
Fourteen years ago, my husband and I found ourselves in this situation as we were told our daughter, China, had Wolf-Hirschhorn Syndrome. However, after being given some information from the hospital’s family services program, I was in contact with a mom who knew what I was going through, could give advice on what I could expect, and would connect me to a group of families that had traveled the road before me.
This group of families was the 4p- Support Group. Because of the handbook designed specifically for those with WHS, the quarterly newsletters, the listserv where such willing parents are willing to share their advice and concern, and probably the most important – the national and regional gatherings, our family has been given advice and strength that we would not have received on our own.
This support group has been able to educate the medical community about the syndrome, help in national and world-wide research projects to enhance our children’s lives, and to connect with support groups in other countries to globally educate more people about WHS.
Yes, our family could probably have done okay on our own by not connecting with the group. But, when I think about what we would have missed and what others would have missed by not being a part of the 4p- Support Group, it makes me want to encourage other families all that I possibly can.
The support group needs you. They need your help, your talents, and your story to share to the world about our children.
Marilyn Hutchinson, mother of China