Wolfhirschhorn picturesIn 2007, there was nowhere to go. A brief search on the internet brought back fear and pain. For many years, The Physicians’ Guide to Rare Diseases was the primary source of information to families searching for answers.  Every geneticist reiterated the same message: your child won’t make it.

But now we have the truth. We’ve uncovered amazing people over the past 7 years, Like Jaap who was born in 1955, and Jon York, born in 1964. We now know that what we are told from the doctors is not the real truth.

It’s been an amazing journey. wolfhirschhorn.org originated as a personal outlet for pain management. I often reached for the pen and paper to document Kendall’s history and our life experiences with her new syndrome. Not really knowing what to expect, I spent many nights writing about who she was and what were going through, hoping that others might relate.

Reading of other families early on, I gathered motivation to make this personal writing experience more than just a personal thing. I give credit to other families that were inspired to also tell their stories. The Mannings, the Cordill’s, the Mowery’s, the Rivera’s and the Aman’s. These are families that provided hope and support during our time of confusion and chaos. There was no way we could have made it without them. More importantly, I give a great deal of credit to Lauren Uhrich. Her passion for sharing Norrah and her incredibly positive view on life during their battle with WHS, encouraged me to make wolfhirschhorn.org a reality.

Now, seven years later, we’ve created a permanent landscape for families to feel safe with a platform for sharing and discussing our children with the rest of the world. We’ve given doctors, nurses and geneticists a REAL answer to what Wolf-Hirschhorn Syndrome means to our children and our families. It’s because of our collective effort, the Wolf-Hirschhorn Syndrome paragraph in the Physician’s guide to Rare Diseases is incredibly out of date. We know more than they do!

We’ve created a history and a path that will provide hope and joy to new families. We’ve given close to a million website visitors a reason to believe that our children are a gift that keeps on giving. We’ve provided our children a stage to be great and the opportunity to shine in their own way.

As a community, we’ve worked together to make this a reality. The Real Story has been told.

Kendall turned 7 years old the other day. She has grown into a little girl right before our eyes. Her enthusiasm and love has taught me to smell the roses every single day. She lights up every room she enters and draws attention in such a way that I’ve never seen before. There is so much we can learn from her, and I can’t imagine what life would be in her absence. It’s the constant imagination of what she will become that motivates me to continue pushing the cause with wolfhirschhorn.org.

But there comes a time when pushing the message to the world has become less of a priority for me – and now is that time. I feel that I’ve created a platform to get this community off the ground with people that have engaged with our mission. The words of encouragement from everyone, including the sharing of their children, has made our story complete. We could never have accomplished what we have to this point without people like Ross Lennox and Janet Beiswanger. It’s their consistent efforts that have kept the ambition alive over the past 12 months.

I’ve have officially crossed over from driver to passenger; and now comes a new chapter in this story. However, we are not finished – not by a long shot.

I am officially stepping down as the face of wolfhirschhorn.org and would like to introduce Anitra and Dan Schulte as the new head of the wolfhirschhorn.org community. I’ve known their family since early 2012, when Elsa was born. They live by to us and we’ve been able to form a bond through the experiences we’ve shared together as WHS families. They are a wonderful family and have committed to take on this great opportunity to take wolfhirschhorn.org to the next level.

Here is the message from Anitra and Dan as we launch into the next phase of wolfhirschhorn.org. They are both very talented individuals, with a passion to carry the torch through the next phase of this great adventure.

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Hello everyone! We are so excited to be connecting with all of you through wolfhirschhorn.org. Our daughter Elsa, age 2 ½, has WHS. You may have read a bit about our blonde-haired, blue-eyed, gentle, loving girl, through this amazing platform. You’ll be hearing even more from us now, as we look to have an increased presence on the site – pulling together exciting digital events and stories, making updates to the look-and-feel of the site, and interacting with new and existing WHS families.

We received Elsa’s diagnosis when she was 8 days old. Vividly, we can recall our scary appointment with hospital geneticists. The prognosis seemed so grim. Then one-by-one, friends and family began telling us, “You have to get online and go to this amazing support group website.” And, “I promise you, it’s different. This website is really uplifting and inspiring.”

We were nervous to visit wolfhirschhorn.org at first, for many reasons. We weren’t sure what we’d find. Would the children’s abilities give us hope, or be a harsh reality check? How would children older than our infant look? Would details about their abilities be sad and limiting? When we finally mustered the courage to check it out, all of our concerns melted away. We saw beautiful boys and girls full of light and life. We heard from strong and positive parents – with viewpoints both honest and supportive. We learned things about seizures, ASDs, feeding tubes, reflux, growth patterns, development and so much more, that from day-one were meaningfully applied to our lives.

For the past 2-plus years, wolfhirschhorn.org has been a remarkable network of support for us. Hearing your stories and connecting in-person with Kevin and his family (who coincidentally live very, very close to us) have been endlessly helpful. This community – in tandem with our faith, families, friends, doctors and therapists – has given us something priceless: And that is, we have NEVER felt alone. Not for one minute.

This is why we are so proud, honored and humbled to be stepping in to pick up where Kevin is now leaving off. We know we cannot fill his shoes. After all, Kevin built this community brick-by-brick from the beginning, with each of you. However, we are inspired to do our best to give back to wolfhirschhorn.org what it’s given to us – a place to call home, where all questions are safe and where the love constantly flows.

We have some fun ideas for the site, and we welcome your suggestions, too! Please look out for information on exciting ways to share your stories and photos, to keep the conversation about our amazing kids going strong, so we can learn more about WHS together and serve as a beacon of hope for new families joining us every day.

Keep an eye out for some new things soon. If you have questions, please contact me directly at anitraschulte@gmail.com. As always, Kevin will be available also at kevin@wolfhirschhorn.org.

So much more to come!

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4 Responses to wolfhirschhorn.org: The passing of the Torch

  1. Dear Kevin,
    As someone who shared your journey in its earliest days, I cannot help telling you how incredibly proud I am of your contribution to WHS families. Since leaving Kendall, I have had at least one child with WHS on my caseload and each of these families has felt supported and, most importantly, “not alone” because of the time, effort, creativity, and love you have shared with them. I will continue to follow this website, and hope to see frequent news about Kendall and all the O’Brien’s.

  2. Kevin, first and foremost, “thank you” from the bottom of my heart. 6 years living alone and when Phia was diagnosed we found this site, our lifeline. Looking forward to sharing in the next chapter. HaPpY 7tH BirThDaY, Kendall! Also, looking forward to meeting the Schulte’s and continue your vision pressing in, living with WHS, together.

  3. Anitra says:

    Janet, so nice to meet you! We feel a great calling to carry the torch, as Kevin so eloquently said, and look forward to connecting with you!

  4. Donna says:

    Amazing help from one another true experience and diligent trials of truth in life. So true how doctors tend to not know everything in human life, we need not put are full trust in them but also have the hope that there is something else more powerful with more force that truley has all the answers, my friends that is our living God. Through his messages in life and our connections we can unravel the wool that’s been put on our eyes. God bless all our children and may we keep helping one another through communication!

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