Tag Archives: PBD

Pause for PBD

Faith & Hope, Parenting, Special needs children, ,

On October 5th, we will Pause for PBD and I would like for you to join us.

On this day, the Global Foundation for Peroxisomal Disorders will be celebrating it’s 5th birthday, and in honor of this foundation that helps families affected by PBD, I’m asking for some favors from my readers. But before I do, let me tell you how this organization has blessed my life.

When Gideon was diagnosed, I didn’t know anyone who had a child with PBD. It’s pretty rare. Shortly after, I began blogging about my son and within a few days, my first post was shared with Shannon Butalla…who lives in Omaha Nebraska. When I told her what the doctors said (Gideon wasn’t going to live past one year old) she said, “I don’t want to tell you that your doctors are wrong, but they’re wrong.”  After 30 minutes on the phone with her, I was relieved to finally know someone who actually knew what the heck they were talking about in regards to PBD. Shannon has lived and breathed it for the past 13 years with her son, Sam.

Shannon and a few others are responsible for the inception of this organization that provides hope and support to families like ours. They provide a means for equipment exchange and through donations and fundraising, the GFPD was able to help cover the cost for us so we could attended their Family & Scientific Conference in Omaha.

Today, we are now connected with an enormous family of some of the strongest people I know…people who battle this horrible disease every day as it slowly pulls our children away from us.

So it’s my hope that you’ll be able to help the GFPD celebrate its 5th birthday in one or more of the following ways.

  1. Click HERE to purchase a Pause for PBD t-shirt (their goal is 300 shirts..but I think we do better than that!!)
  2. Share this LINK on your social media sites to help raise awareness & funds
  3. Use the hashtag #PauseforPBD on social media as well a photo of Gideon (or any other PBD babies you may know…You have my permission to share the one below.)

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I just want to say thank you to all my readers. Your comments and messages of support have meant more to me than I could every adequately express.

Thank you for continuing to follow our journey and don’t forget to Pause for PBD on October 5th!!

To learn more about PBD, click The GFPD.

 

 

 

Omaha Bound

Special needs children, , , ,

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The Jolicoeurs are on the road again!! This time we are Omaha bound! What’s in Nebraska, you ask? The 2015 PBD Family & Scientific Conference!!

We are SO excited to meet other families like ours as well as doctors & specialists who are dedicated to researching and caring for our PBD kiddos.

We are coming from Dallas, so its going to be a long trip. We are 5 hours in and have already made 3 stops…one rest stop, a Braums with NO changing table (grrrrr), and of course, Cracker Barrel.

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Thankfully we have family in Wichita, KS so we will stay with them tonight and finish the last half tomorrow.

Shout out to the Robinson’s for letting us borrow their 4 Runner. (My vehicle is too small for all our bags plus G’s chair; and the A/C is broken in Kevin’s Vue.  Womp womp.)

We are SO excited for this conference!! Stay tuned for pictures of Gideon with all his new friends!!!!

In the meantime, we are Omaha bound!!

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On a side note, I spoke with a manager at Braums. She told me they have been asking corporate to install changing stations. She gave me the number below & I spoke to their customer service.

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They told me they were in the process of installing them into all their locations nationwide, but she couldn’t give me a set date as to when it would be complete. If you don’t mind, please take time to call them yourself. If enough of us call, maybe they’ll make this a priority!! Nothing worse than having nowhere to change your child.