Archive for May, 2017

New Blog Site!

Please note that I have changed the location of my Blog!  You can find it at http://davidsrefuge.org/about-us/warrens-blog/.  If you signed up to have my blog emailed you should still be receiving them.  If not you can once again sign up to have them emailed to you each time I write.  Thank you for following and reading my rambling thoughts.



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HOSTS recycling experts

I want to introduce to you two good friends of mine, Jeff and Bitsy Namy.  Jeff and Bitsy have been volunteering with David’s Refuge for the past several years and have just joined our host team.  They are compassionate, selfless, and caring people who have been shaped and prepared to be excellent hosts by experiencing first hand the brokenness of the beautiful world we live in.

In 2006 their second son, Joel got very sick with bone Cancer.  He came home from West Point for treatment and beat it.  The next year he returned to West Point ready to play football again.  Unfortunately, a few months later, they discovered he had leukemia as a result of the bone cancer treatment.  He was given a bone marrow transplant but sadly died 82 days after the transplant.

As you can imagine this was devastating for Jeff and Bitsy and Joel’s three other siblings.  They grieved, they struggled to understand how they would go on, and they wrestled with the goodness of God.  Everyday they woke up they had a choice to make: will they allow this brokenness to cause them to be become bitter and withdrawn, or would they somehow become better by recycling the care and love others had shown them as they walked through Joel’s sickness and passing?  While it took time, they chose to become better and now come alongside other families as hosts who understand first hand the difficulty of being a mom and dad whose child is sick or disabled.

Jeff and Bitsy, along with the other 23 couples who are hosts for David’s Refuge, are all recycling experts.  They have consciously transformed the tears and pain and frustration and sadness and sleepless nights and unfulfilled dreams that are a part of being the parent of a child with special needs into something beautiful.  They recycle the broken into acts of love and service to those who are still on the journey.  This is why I think David’s Refuge has been so successful.  I hope their example will motivate you to do the same.  Without a doubt they would all tell you that you are not alone, what you do matters, and that you are loved by God.

If you want to hear more of Jeff and Bitsy’s story, here is a video from the church they attend:





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david as young boyTwenty years ago, just around this time of the year, our little boy David began to lose his vision.  Little did we know at that time both mom and dad has passed on to him a defective gene that would slowly rob him of life.  On October 22nd, 2009 David’s battle with Batten Disease came to end.  Exhausted from fighting an unbeatable foe, surrounded by his mom and dad and two brothers, David took his last breath and left this world for a better one.  No more blindness, no more seizures, no more wheelchairs, no more diapers, no more medications, no more inability to communicate his feelings or ideas.  He was now free.

When David was alive we often struggled with an overwhelming sense of hopelessness knowing we were fighting an unbeatable foe.  I can remember hearing the words from Dr. Wisnewski, “Your son has Neuronal Ceroid Lipofuscinosis.  It is untreatable and fatal.”  In her brief message she handed us  David’s death certificate all filled out except for the date of his death.  Every loss David experienced was a painful reminder of this horrifying reality.

Though out the years we would read of new research studies that were using mice or dachshunds to study the disease.  They could replicate the genetic abnormality in these animal models giving them an effective way to study how the disease affected the brain.  Sadly, I still struggled having hope they would find a cure.  We read of enzyme replacement studies and stem cell research.  And while I wanted to believe there would one day be a cure, I have to honestly say I still struggled having hope there would be.  Wanting to believe and have hope, we financially supported the Batten Disease Support and Research Association knowing that they were committed to finding a cure for this hellish disease.  Would there ever be a cure?

A week ago today I opened my email and found the following press release from the US Food and Drug Administration:

FDA Approves First Treatment For A Form Of Batten Disease

It states,

The U.S. Food and Drug Administration today approved Brineura (cerliponase alfa) as a treatment for a specific form of Batten disease. Brineura is the first FDA-approved treatment to slow loss of walking ability (ambulation) in symptomatic pediatric patients 3 years of age and older with late infantile neuronal ceroid lipofuscinosis type 2 (CLN2), also known as tripeptidyl peptidase-1 (TPP1) deficiency.

The impossible is now possible.  What once seemed hopeless is now filled with hope!

I’m not sure what you are struggling with today but my word of encouragement is to never give up being hopeful.  Never!  Sometimes we just have to be patient.


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