When there are no words

When we began researching Wolf-Hirschhorn Syndrome, I discovered that there was a community of families, whose children had this syndrome. This community is unique in that although we may never meet in person we have been able to develop relationships and be a support to each other.  These families answered questions for us and continue to support us as we unravel and figure out this syndrome called Wolf-Hirschhorn.  One of the scariest symptoms of Wolf-Hirschhorn is seizures.  Leo has had a few seizures but they have all been febrile and relatively short in length.  One of the first moms to reach out to us and begin answering our questions was Tracy.

During the last week Tracy's son Noah had a seizure which has resulted in brain damage.  The following is from Tracy.

"Well Noah is not stable enough for the port and mri. There is nothing more the Doctors can do. The brain damage is extensive, we live to far away from the hospital for pallative care support from hospital. Our ped is going to handle the care and make house calls. We are taking Noah home to be with his family. Please continue to pray for our whole family. It has been a devastating heartbreaking blow to our family. Noah may surprise us and stay with us longer that is between him and God."

So many days I function as if there is nothing wrong with Leo.  Let's just say this event with Noah has rocked my world and so many others in the WHS community.  It hits home.  This could easily be Leo or any of the other WHS kids.  There are no words to express to Tracy and her family the pain we know they are going through.  We can only pray for healing and God's peace for them.  Please pray for for little Noah and his family and his siblings.   


Remember, whether your child has a rare genetic syndrome like Leo and Noah or not, life is short.  We are not promised tomorrow.  So live for God today and make a difference in someones life.


Because we are also part of the adoptive community, which is another wonderful and supportive community, I learned of this situation yesterday.  This family knew the "risks" when they traveled.  They knew because their son was older he would have to give permission to be adopted.  I am in awe of the grace and peace they are exhibiting.  Please pray for this young man as he must decide his future by Friday.  You can go here to read and get more information so you can pray.