Yesterday we got a call from the Neurologist and he told us that Riley's genetic testing came back positive for SMA(spinal muscle atrophy). This is the diagnosis that we were not hoping for. There is only one specialist that deals with this disorder and she travels internationally. He needs to get a hold of her and then he will call us back on Monday to set up another appointment. It has come to us as a great shock and we're are not sure yet how we are to cope with the situation. It doesn't seem fair that the baby we waited so long for will be taken from us in such a short amount of time. If any of you want to find out more about this disorder you can check out these websites.
http://www.fsma.org/
http://www.fightsma.org/
11 comments:
I love you Bec. I wish I could be there for you. Call me if ever you need to talk. I honestly can't think of a harder trial in life. I love you so much, keep us updated. I'll be back in SL in late July.
Randy & Becah - I am at a loss for words. I am so sorry that you are having to go through this. It really isn't a fair thing that he is being taken from you.
All I can think of is what a choice spirit he must be, all he needed was a body. He will get to return to our Heavenly Father where he will be perfect.
I am so happy that you guys made the choice to be sealed in the temple and you will be able to see him again.
I love you guys so much. Let me know if there is anything that I can do to help in anyway.
Love Ya - Heather
Wow Becah, I'm so sorry. I couldn't even imagine how hard this is for you. I will keep all of you in our prayers. Love you guys!
Love to you and the whole family. You know you can call me for anything. You're in my prayers.
Becah, I'm so sorry about the news...... Wow, it must be fate that you became a respiratory therapist so you will be able to help him through this more than most mothers could.
Hi Randy and Becah:
I am sorry to hear about Riley's diagnosis of SMA. My name is MJ or Margaret and I have SMA type 1+ (cross between a type 1 and a 2. I am 20 years old and attend college. There are 3 top docs in the country: Dr. swoboda in Salt Lake City, UT Dr. Bach in Newark, NJ and Dr. Schroth in Madison, WI. I also know lots of families from around the country if I can help in anyway, please let me know. I also have my own organization, B4SMA, and I send blankets to kids with SMA and would love to send one to Riley. Please contact me if you have any questions or if I can help in anyway.
My email is b4sma_kids@yahoo.com
My websites are:
www.our-sma-angels.com/b4sma
or
www.our-sma-angels.com/Margaret
Hi kids,
You have done a great job with this website. I love all the pictures of Riley. You guys are going through a tremendous thing right now. I know some of your feelings for we went through the same with Sarah. Remember to enjoy every moment you have. Always look on the positive side. Remember Heavenly Father hears and answers prayers. I too am at a loss for word, I have gotten so attached to this little guy. I enjoy the weekends we have him.He seems to wrap everyones heart around his little finger. I was so glad to see however the blog of the young lady that wrote and told you she was 20 and has type1-2 SMA it gives me hope. Love you so much.
Mom
hWe wish we were closer Becah to be there for you. But know that we will keep you in our prayers and hope to visit sometime so we can see that cute smiley Riley!
It is so hard to understand these trials in our life. May you be blessed with strength and endurance. Love you! Ralph and Jer
Marc and Becah,
This is such a huge blow, I struggle with the right thing to say. Know that Buzz, the girls, and I are thinking of you and we will do what we can to help you. We love you and that smiley Riley...Buzz, Heidi, and girls
Becah,
After waiting so long for Riley to come and then to have the doctors give you this news it leaves your heart in a thousand pieces. Your family is in our thoughts and prayers. We love you!
Love,
Alex & family
We love you guys! Our thoughts and prayers are with you. The two of you are extra special parents and Riley is a lucky boy to have you for the time that he is here!
Post a Comment