MPS Awareness Day

 

This is Hannah, before all of the tubes, and the machines.
happy Hannah, before all of the tubes and machines...

May 15th is MPS Awareness Day.  For those of you who have never heard of this disease, you can read more by clicking on this link.

I became aware of this disease last summer.  A lady I was in a Bible study with had a granddaughter undergoing testing, but the doctors were not sure what was wrong with her… only that something was wrong.  They finally reached the diagnosis of MPS I  (Hurler Syndrome) and thus began little Hannah’s journey in the world of treatments, medicines, hospitals… steps forward… and steps backward.

After her first stem cell treatment did not take, she had another one done.  This one was looking positive until she started to get sicker and sicker… and on December 27th, 2008, Hannah’s “mortal life was swallowed up by life” (2 Corinthians 5:4) at age 17 months. 

By the grace of God, her parents are expecting a baby boy… and prenatal genetic testing indicates that he does not have the same gene that caused Hannah’s MPS!  They didn’t even know that they were expecting as they mourned the earthly loss of their precious daughter! 

However joyful that expectant day will be, there will always feel Hannah’s absence.  So, on May 15th, if you would like to participate in remembering Hannah… if you happened to read about her in the past… if you’ve prayed for them in their struggles and healing process… maybe you too have lost a child and feel compassion for her parents…  Wear a purple ribbon this coming Friday in remembrance of Hannah, and in honor of the families still struggling with this disease. 

Hannah’s parents and family are also planning a balloon release.  If you want to do this, no matter where your location, go ahead!  We are going to do it at our house because this sweet baby did more to help me appreciate… really appreciate… my own children and their health. 

If you want to read my previous posts about Hannah, here they are in chronological order:

Sometimes it’s hard to understand

Things are looking up

I still don’t understand

Update on baby Hannah

My heart is breaking

The email I dreaded all day

Hannah’s Visitation

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