A Star of Hope for Jase

Lots of you have followed the journey of our family and extended family with SMA, an unforgiving, incurable, fatal disease until… someday. When our two children were born in 1977 and 1982 there was not even a remote star of hope on the horizon.  In 2011 and 2012 there was no cure for Truman and Ariel, only hope that… someday. Someday.  Someday.  And somewhere between then and now, someday has burst into being. Someday is now a star of hope. Someday is now a glimpse of reality.

On July 16, 2015, little Jase Marius, brother to Ariel,  was born. From all appearances he was a healthy baby, however, one week later blood test revealed the hidden truth. It was a devastating blow to our prayers and hopes.  Little Jase had SMA. You can read more of that part of the story on my blog post Heatwole Family Reunion-2015.

Jase Yoder-birth July 16 2015

Let me tell you about someday. Type 1 SMA babies can not roll over, sit up, walk, or kick.  They lose their ability to eat and breathe. They usually do not see their first birthday.

Pictures are worth a million words….just take a look at this miracle!

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This past week little Jase’s mom wrote on her facebook page….

To the “Cloud of Witnesses” around Jase’s life:
Life is busy and full these days, but we think often of all the people who pray for us and are grateful! We want to show you what God has been doing:

Jase rolls front to back. He rolls back to front. He stands holding his own weight. He has two teeth and eats solid food. He sits! Yes, the baby diagnosed with SMA Type 1 SITS! By himself!! (Miracle alert!!) There are lots of smiles and exclamations of amazement in the exam room these days.

The drug study continues… Jase received the fifth dose this past Tuesday. Jesus said to pray, “give us our daily bread…” and I’ve often thought of the drug in this light (though it’s not given every day – hooray for that!) I see it as provision for his strength. And where that ends there’s, “Come, do! On earth as it is in heaven.” And when mystery remains, “underneath are the everlasting arms.” So we’re doing well. (Grace!!)

Our praise is to God the Lord who created us, who arms us with strength and who reveals secrets to the sons of man. In spite of the fact that if WE were choosing, SMA would not be a chapter in our story, we’re grateful for front row seats on breakthrough that doctors are saying they hardly dreamed was possible.

Do you know how thrilling it is for this mommy to have a “normal” conversation with the pediatrician at a well visit?! You can imagine, I’m sure. We LOVE this happy, funny, growing little boy!

There are still many unknowns.  What will happen at the end of two years when the clinical trial is done? Right now they are sailing on unchartered medical waters.

Somday is today.  Today we give God thanks for His goodness and mercy in Jase’s life, all praise and honor to Him alone.  We thank God that He has allowed “someday” to be today.  Today. Today!  This mom never dreamed in 1977 when I wept over the casket of my little Karla, that I would see someday.

 

 

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