Remembering Eric

We have an extremely small support group for Klippel Feil Syndrome through a website MDJunction.  The core group that has been together for about three years from what I can tell.  The core group has been supporting each other through surgeries, medicines, fighting for disability income, talking about doctors and therapies, anything that can share information and provide support.  I joined the group not long after Thomas' official diagnosis in January and have made some great connections with some extraordinary people.

Today this small community learned that we lost one of our own.  Eric Heistand lost his life due to complications of KFS three weeks ago.  He leaves behind his wonderful wife Jana and two kids, Joshua and Abigail.  See his obituary here:

Kitsap Sun: May 15, 2012

Eric was born January 29, 1976, only eight months before I myself was born.  Here is his bio in his own words:

I am a Christian. :) I believe that God is Sovereign and that He is with me throughout all these medical issues.

I believe in the power of prayer. If you would like me to pray for you, please let me know. Happily married to my wife Jana for 10 years. Daddy to Joshua and Abigail.

Diagnosed with KFS in 2010 at age 34. Chronic headache and motor skills degeneration prompted surgery due to Basilar Impression. On Dec 2, 2010 I went in for Lamenectomy and Cervical Spinal Fusion Occiput through c6 to decompress my Brain Stem. Dealing with increased pain and pretty wild muscle spasms in my left leg. Now I am dealing with a spinal cord injury which is causing havoc on my body. Waiting to see what comes next in all of this.

Eric shared is story as well as many thoughts and frustrations with our support group.  He even shared these amazing images of what he was dealing with and their solution.

Eric's Pre Op MRI, you can see the pinch at the top of
his spinal cord.

Eric's x-ray, post op.

This surgery was performed on Eric about 16 months ago in an effort to correct the pinch and relieve his chronic pain.  The surgery took longer than expected and his recovery was quite trying.  He had about two good months and progressively declined after that.

His sister posted in our support group reaching out to other people with KFS to share his story and his life to learn all that she can and join in our efforts to increase awareness and create an advocacy for Klippel Feil Syndrome.  You can read more at Eric's online diary with our support group, http://www.mdjunction.com/diary/my-new-life-5.  His father has given us permission to share his story.  In fact, I want to share with you his father's beautiful words that he shared with me tonight:
"oh Allison, thank you so much for your words. You have no idea how much they mean to me. Please, by all means... share anything your heart desires concerning Eric. As I just got done telling Sharon, Jesus's light shined through Eric, especially during the last three years when he suffered most. Don't hesitiate the share, let what Christ did in Eric's life shine BRIGHT for Christ's glory!"

I don't know Eric and I never had the privileged of meeting him or his family.  But I can tell from his words and the legacy he has left behind that he was one amazing human being.  He relied heavily on his wonderful wife and loved his kids with all his heart.  He also had an amazing church family who was always there for them and did what they could with prayers, food and financial support.  Proof can be found in this wonderful video that his father posted:                Grieving son hits Grand Slam after father dies

What a beautiful testament of a man who should his family love and God showing his presence on a family who needs to feel uplifted during this time.

His sister used the log in name on our support group as Psalms 75.  I thought it was a beautiful passage!  
We praise you, God, we praise you, for your Name is near; people tell of your wonderful deeds. 


To Eric and his family, our prayers and thoughts are with you and will always be with you as you begin the new chapter of learning to live with God's promise and a life without Eric.  Those who have been touched by Klippel Feil will always remember Eric and pray that this will have a positive impact in our efforts to create awareness and support for this rare disease.  I can't help but think that there are so many opportunities for the doctors and specialists to learn more and to be able to prevent the same ending to so many others.

"Then he (the penitent thief on the cross along side Jesus) said, 'Jesus, remember me when you come into your kingdom.' He replied, 'Truly I tell you, today you will be with me in Paradise.' (Luke 23:42-43)

God used Eric to tell a story, Eric allowed the light of Jesus to shine through him everyday despite the hurdles that his own body gave him.  We can take comfort in knowing that Eric is now pain free and with our one and only Heavenly Father.  Eric brings hope to Robert and I as the parents of sweet Thomas.  We have hope that Thomas will grow up to be a wonderful young man with a family of his own.  We will raise him in the same spirits as our other sons in that God loves you more than I, God has a marvelous plan for you and as long as you have God in your heart you will shine in this world.  Together we will make a difference and we will make sure that Eric's story is heard as well as the many others with Klippel Feil Syndrome.  

"For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us." (Romans 8:18)