As you start planning for your summer holiday, add one more thing to your to-do list: Update your information with

This summer, we are updating the Child Locations database, and we need your help. Here’s why it matters, and why now is the time for a refresh:

When you received your child’s diagnosis, after settling into your new reality, you may have reached out to see if there was a WHS family near you. That’s because there is absolutely nothing like meeting face-to-face with children with WHS and their families — to share stories (from first genetics meetings to weight watches), swap ideas (from seizure meds to therapy strategies), and perhaps to even get a glimpse of what your own child’s future might look like. When our online community becomes a physical community, deep friendships can form — friendships that can benefit not only our children, but us, the parents and care givers in need of support, reassurance and reinforcements.

It’s been exactly 2 years since our Child Locations map has been officially updated, and it’s time for an refresh. Even if you feel 100 percent certain that we have your info, please send it again. We’d like to make the update as comprehensive as possible. Some of you may have moved, as well. All the more reason to update your info now!

Please send the following via email to, as soon as you’re able:

– Your Name (not your child’s name)

– Your Email Address

– City, State and Country of Residence

This information will ONLY be added to a spreadsheet, which we will use to create an updated map. We will NEVER give out your information (name/email) to someone seeking a WHS family contact in their area without checking with you first, to ensure that you are open to connecting.

Please join us in making this database as accurate as possible. I can personally attest that it has made a huge impact in my family’s life — introducing us to the site’s creator and to his darling daughter, and giving me the chance to get to know all of you.

Look forward to getting this map in good working order!



5 Responses to Child Locations Update: Summer 2015

  1. Ditta Aghakhanian says:

    We have a daughter aged 38 who was diagnosed with WHS appx. 3 years ago. We live in Surrey UK.

  2. LittleJohn says:

    My son is 16 and we live in the North East of England (Gateshead) United Kingdom.

  3. Looking to talk with someone else who also has a child with WHS. We have a great-granddaughter named Hadley, she is 4yrs old now. She is the love of our lives. She is still non-verbal and non-mobile. But started school this past September, so we are hopeful and look forward to her progress.

    Patricia Novak, Latham, NY USA

  4. Ross says:

    Hi Patricia, welcome to the site – great to hear about Hadley, starting school is a big step and I’m sure she’ll flourish.

    I’m not sure if you’re on Facebook, but the Wolf-Hirschhorn Syndrome Awareness group is a great place to connect with other WHS families.

  5. Anitra says:

    Hi Patricia! Welcome. As Ross suggested, the Facebook page is very helpful for linking up with folks. I also maintain the database and can work to connect you with a NY family. Please send me an email (, and we can keep the conversation going.

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