Skip to main content

How can you help?

Do you know someone who has never heard of Peroxisomal Biogenesis Disorder-Zellweger Spectrum Disorder (PBD-ZSD) before?
Start talking about PBD-ZSD. Share Ethan's story with them. Read about PBD-ZSD and help us let the world know about these rare disorders.

Do you have the financial means to donate to the cause?
Whether it is $5 or $5,000 any donation is appreciated. You can donate online at www.thegfpd.org or if you would like to sponsor a fundraiser for the Global Foundation for Peroxisomal Disorders (GFPD) contact melissa@thegfpd.org and let her know your idea (jewelry party, walk-a-thon, bake sale, auction, etc.)

Are you able to send an email or a letter in the mail?
If so, contact your local, state and federal legislatures and let them know that it is important to support kids with special needs and their families. Let them know how crucial Early Intervention services are to kids 0-3 and how important special education programs are to school aged children. Tell them how important it is for children with disabilities to have access to health care!

Are you pregnant or know someone who is?
If you are pregnant or know someone who is and you/they aren't planning on banking the child's umbilical cord for their own family, please don't let it be thrown away! Donate it - it is FREE, ETHICAL, and COULD SAVE A LIFE! Who knows, this type of medical technology might someday be a means for a cure for genetic diseases, like the one Ethan has!
Visit http://www.marrow.org/HELP/Donate_Cord_Blood_Share_Life/index.html to learn more!

Are you considering starting a family or adding to your family?
If so, you may want to consider taking a simple saliva test that would test you and your partner's carrier status for over a hundred different diseases. The test by Counsyl could let you know if you and your partner are at risk for having a child with a rare disease. We had never heard of this before we had Ethan, but if we had done this, we would have found out that Jeff was a carrier for the G843D mutation. The test can't test everything and my mutation is more rare and wouldn't have been identified, but at least we would have had a heads up, etc. You can learn more about carrier screening at www.counsyl.com

Popular posts from this blog

So much and so little to write about...

When I started this blog I don't think that I could have imagined a time would come in which months would go by without me writing. However, that is what has happened.

So much has changed over the last almost eight years since Ethan's birth and subsequent diagnosis with PBD-ZSD, yet at the same time so much hasn't. Unlike parents of typically developing children we find ourselves still parenting a child with complex medical needs who's developmental skills range anywhere from 9 to 18 months. Ethan still has PBD-ZSD, and right now his uncontrollable seizures are a major issue. We still fight PBD-ZSD the best we can each day with a basket full of medications and supplements and other medical interventions (feeding tube, cochlear implant, AFOs, etc), numerous therapies, school (which Ethan loves), and prayer. We advocate for him and all children and families impacted by PBD-ZSD and related peroxisomal disorders through our involvement in the Global Foundation for Peroxiso…

A Family of 3 Once Again....

Jason Johnson is a writer of a blog and several books about fostering and adoption. One of his recent posts "Foster Care, Adoption, and Saying Yes to the Unknown" is a powerful and insightful look into the life of a foster parent. I'll be the first one to admit that when we said "YES" to two little girls who needed a family that we never thought that I'd be writing about the girls return to their biological parents. However, a little over a week ago our two foster daughters moved back in with their mom and dad.



"Saying Goodbye To The Foster Care Child I Fell In Love With," isn't exactly like our story, but there are a lot of similarities, and gives you a bit of a look into what we have experienced and are now experiencing. We are heartbroken and grieving. We miss them so very much, be we also know that they are loved and that they are happy. This summer as we prepared for this we spoke openly and often about the fact that you can be both happy…

Back to School Time!

It's that time again to head back to school! Ethan loves school, which is great. We know that we are extremely blessed to have a great team of professionals who work with him daily. When we first received the PBD-ZSD diagnosis I couldn't even imagine that Ethan would live long enough to go to preschool, let alone make it to elementary school. Even as I write this I can't help but think of all of my friends who aren't able to share first day of school pictures. "Dear Kindergarten Teacher: My son will be absent on the first day of school" is a beautiful tribute to bereaved parents everywhere. 
As school starts this year we are also thinking about and praying for our former foster daughters who are now back home with their biological parents. Driving by the bus stop, instead of walking down there with three children in tow, like I did the previous two school years, on the first day was a bit emotional. Since we don't live in the same town, that means the gi…