Sunday, January 18, 2015

Our hearts are breaking

Typing in the blog address to write this post I am reminded that indeed it is a journey of FAITH!

Friday was hard....

We are still processing the appointment so it is hard to put my thoughts into words...

We are mostly feeling SAD for Bryan as his future...seems....difficult...

The doctor's don't know his diagnosis yet. We decided together to try and pursue genetic testing. Apparently insurance companies don't like to pay for it. The doctor says we are not in any rush so we will try and take the time to convince them to pay for it before doing other potentially painful tests (good idea!!).

Both the neurologist and physical medicine and rehabilitation doctor suspect Bryan has Spinal Muscular Atrophy (SMA). 

SMA is a terminal and degenerative disease that causes weakness and wasting away of  the voluntary muscles in infants and children.

SMA is the #1 genetic killer of young children

SMA occurs in one out of every 6000 births

1 in every 40 persons unknowingly carries the gene for SMA

SMA is a pan-ethnic disease - it does not discriminate based on race, ethnicity, or gender

There is currently no cure or treatment

Researchers estimate that a cure or treatment is attainable in as little as five years

There are 4 types of SMA...it is likely he has type 2.

We PRAY Bryan doesn't have SMA!

We PRAY for a MIRACLE - God still performs them!

And:
We love Bryan with ALL our hearts!! 

We are soooo BLESSED that he is a part of our family!!

Knowing what we know now....We are STILL glad that we adopted Bryan. We can't imagine him going through this without a family LOVING him. 

I feel INCREDIBLY blessed to be his mama!

AND....I have cried more tears this weekend then I have cried in a loooong time. 

My heart BREAKS for Bryan.  


  Bryan LOVES playing in the "see-no" (snow)!

Thank you for covering us in PRAYERS!!

Blessings, Sandy

4 comments:

  1. Tears as I am reading... know that we will lift up Bryan daily, pleading for His hand to do something miraculous, that He receive glory and through this Bryan's medical team may come to a receiving knowledge of the Great Physician. Wish I could be there to hug and intercede with you in person. Lots of love from across the waters!

    ReplyDelete
  2. Sandy, this possible diagnosis breaks my heart. I am so glad Bryan has your family and I'm praying for good news or a miracle or successful treatment options.

    ReplyDelete
  3. Sandy -praying for all of you - for Bryan - miracle cure/ healing and for all of you strength, peace and comfort and discernment/ understanding/ patience - all your needs.

    ReplyDelete
  4. I am continually praying for Bryan and you. Thank God Bryan has a warm and loving family.

    ReplyDelete