Skip to main content

My Heart Breaks for My Friends [and for Ourselves]

In less than two weeks two precious little girls lost their brave battles with PBD-ZSD. Our family has had the privilege of knowing each of these families since we connected with the GFPD. We've even had the opportunity to meet them in person, which is a big deal when you are impacted by a rare disease.

Livi was 4 years old. We had not seen her or her family since the 2013 GFPD Conference in Lincoln, NE but we stayed connected on Facebook through our very active parent support group.
They were both completely worn out by the time both of our families had made the trip to Lincoln!


Ginny was 6 years old. We have met her family not only at past conferences, but several other times throughout the last 4 years. I was able to go and visit these dear friends back at the end of February after Ginny had been released from the hospital. It was such a sweet time together. Her mom and I drank coffee, laughed, cried, and prayed. I was also able to love a bit on Ginny and her younger siblings. Our families were also together back in October, when we met up in Kansas City with two other GFPD families.
Ginny, Ethan, Kenna, and Sam -- It isn't exactly easy getting kids with PBD-ZSD to "smile" for a group picture. :)


My heart hurts so much for my friends. I hate this disease. I don't doubt that their little girls are with Jesus, healed completely of this horrific disease and worshiping the One who created them, who knew them as He knit them together in their mothers' wombs (see Psalm 139:13-16). However, this human mommy heart still aches and grieves, and while I hold strong to the promises and hope that I have in Jesus, as my Savior and Lord, I still can't stop hurting for my friends and for us, because it has been a while since I felt the strength of PBD-ZSDs destructive power so strong.

Over the weekend Jeff, Ethan, and I traveled to Oklahoma to attend Ginny's funeral and celebrate her life alongside of our friends. Several other GFPD families were able to make the trip as well and I hope that we were all able to be of some comfort to the family. The prayer service on Friday night and the funeral service on Saturday morning were both uplifting and honored Ginny's life, and the loving dedicated parents, extended family, and all who were touched by her in some way. Ginny loved music, and one of the beautiful songs that was played on Saturday was Laura Story's "Blessings." I am so thankful that our friends share our faith in the Lord and have the assurance that Ginny is with the Creator of the universe, who loves her even more than they do (which is impossible to even try to imagine), and that one day they will be reunited with her in Heaven, in the presence of Jesus.

While Ginny, Livi, and so many other children affected by PBD-ZSD are no longer physically here on Earth, their memories and legacies live on on in the hearts of all who knew them.

Friends, if you do not have a personal relationship with God through His Son, Jesus, I pray that you would come to know Him. For more information please check out "It's All About Jesus!" and "The Story."

Comments

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…

#PauseForPBD -- October 5, 2017

October 5th is a special day for our family as we celebrate #PauseForPBD, the annual awareness day for The Global Foundation for Peroxisomal Disorders (GFPD). [Jeff's birthday also happens to be October 5th but he doesn't seem to mind sharing it with #PauseForPBD day.] Our son, Ethan, is 7 years old and is one of less than 200 children, known to the GFPD, living worldwide with Peroxisome Biogenesis Disorder (PBD).  Ethan has a contagious smile and laugh, despite the fact that PBD has caused him to have severe cognitive and physical delays. Peroxisome Biogenesis Disorder (also known as Zellweger Spectrum Disorder), is a rare, genetic condition affecting multiple organ systems in the the body. PBD is generally fatal in childhood. As a parent, it is difficult to express the sense of loneliness and feelings of isolation that enter your life when your child has a rare genetic disease that most people have never heard or and has no cure.
However, #PauseForPBD, is a day that brings o…

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit.  All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL.  We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders.

Here are just a few of the faces of PBD.