Josh and I met with the doctors today to discuss Riley's case and what they think is a diagnosis. . . After the results they received from her muscle biopsy - the doctors are saying they think that Riley has Werdnigg-Hoffman disease or Spinal Muscular Atrophy Type 1. This is a neuromuscular disease that affects the motor neurons of the spinal cord and brain stem. Werdnigg-Hoffman is the most severe form of SMA and the doctors are saying they believe Riley to be in the final stages of the disease - they have given her a life expectancy of about 1 to 2 years.
To say that we are heart broken is an incredible understatement. I can not put into word the how this feels- but despite all of the pain there is also a crazy peace that can only be described as "surpassing all understanding". We know that God is sovereign and regardless of how much time we have with her in this life she will be beyond loved and her life has purpose and will be lived to the fullest. We know that God's plans are far beyond our understanding and we trust our lives, and hers, fully in His merciful and loving hands. We know that He is bigger than any diagnosis, sickness, or disease and we put our hope in Him.
"My faith does not rest in the wisdom of men, but in the power of GOD." -1 Cor 2:5
We as a family love the Lord our GOD with all of our hearts and regardless of what this life holds for our family we will never cease to praise Him with all that is with in us because He is more than worthy to be praised.
"Shadrach, Meshach and Abednego replied to the king, "O Nebuchadnezzar, we do not need to defend ourselves before you in this matter. If we are thrown into the blazing furnace, the God we serve is able to save us from it, and he will rescue us from your hand, O king. But even if he does not, we want you to know, O king, that we will not serve your gods or worship the image of gold you have set up." Daniel 3:16-18
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11 comments:
We love you all more than you will ever know. And that is that- no way around it. We stand with you completely.
Lee and Lindsey V
We are believing whole-heartedly that the Lord our God is bigger than that diagnosis, that Riley's life has purpose and that she will live to see that purpose acheived. May God continue to be your source of strength, peace, understanding, and the throne to which you run when you need more.
We love you guys and will continue to pray and believe for God's hand in everything.
Will and Gail
Hi :
My name is MJ Purk. My real name is Margaret. I am 20 years old and am a sophomore in college. I have SMA type 1. I'm sorry to hear about Riley being diagnosed with SMA. I have an organization that sends blankets to kids with SMA and would love to send one to Riley. My organization is called B4SMA. My caregiver and several others make the blankets. If you would like more information, check out http://www.our-sma-angels.com/b4sma/ and/or http://www.caringbridge.org/ny/b4sma/
Should you decide that you would like to receive a blanket, please e-mail me with your post address. All we ask in return is a picture of Riley with her blanket covering her. Also, if I can help answer any questions you may have regarding SMA, please don't hesitate to email me at any time. I am not afraid to answer any questions you might have. Big hugs to you and your family.
b4sma_kids@yahoo.com
Love, MJ and Brenda
B4SMA
Turner family: My name is Jana Gundy and I have a son named Kyle James. Kyle is 3 yrs old. He loves movies, laughs, enjoys walks, playing computer games and with toys. Kyle has sma type 1 as well and was diagnosed at 6 weeks of age. We got the same speech. 2 years at the most. He will be 4 in november. Kyle is a weak type 1. I just wanted you to know that there is hope and it's not a death sentence. You can choose your path, but there are options out there. Kyle uses a bipap machine to help him breath, a suction machine for saliva, a cough machine to help him cough. He lives a wonderful, full, happy life. Just like any other 3 yr old. He's just as ornery too! His website is: www.oursmaangels.com/kyle
we will be praying for you. We live in Oklahoma.
Hello . . . like a couple of the others on here, you don't know me but I'm the mother of a Type I SMA child named Stella. She just turned one last week and we were so proud of her for reaching this milestone. Stella was diagnosed at a very young age as she lost all muscle tone at one month of age out of nowhere. We were given the same prognosis as you guys for your little Riley and we went home thinking it was a death sentence for our baby girl. However, then we met so many people through SMA Support online and felt like there was hope for our little girl that we weren't getting from any of the doctors. Stella is on bipap when she sleeps, cough assist to help her lungs, suction, has a g-tube/mic-key button for feeding, and amino acid formula which is easier to digest. She has also started valproic acid which has given her some of her strength back. This is overwhelming to hear about all of this but I just tell you this because Stella is a very happy little girl and is doing quite well. Without her devices, she would need to be trached or we would have faced some awful circumstances. It's important to be proactive with SMA kiddos and we wanted to drag our feet on her feeding tube and other devices but are glad we listened to peoples' encouragement to do things when she was still a bit stronger.
Hang in there and please let any of us know if there is ANYTHING we can do to help you. If you need justification for why you need equipment, we all have letters from expert doctors that have helped us get to where we are today with our kids. Recent statistics have actually shown that with the proper equipment for our kids, the majority of the Type Is are living PAST age 2 now! That's exciting news, especially knowing that SMA is one of the closest neuromuscular diseases to having a cure. We keep praying that the cure is on the horizon and keep up the awesome faith that you have because it will get you through.
Hugs to you all,
Sarah Turnbull, Mommy to Treyton (3 and SMA-free) and Stella (1 and SMA Type I) www.caringbridge.org/visit/stellaturnbullturnbull
Sorry, I'm backtracking through your blog and missed that she has the trach and feeding tube . . . way to go to you for being so proactive with your baby girl!!!! You are on the right track since she will be able to breathe easier and be able to eat without fear of aspiration! Keep up the great work and keep your faith! You are doing great!!!! Sorry, I should have read the rest of your blog first before writing before.
Sarah Turnbull, Stella's mommy
Josh & Becca
God has really put on my heart some things to share with you two. Think about when God told Abraham to sacrifice his only son. I am sure that Abraham was devastated as he went out on his journey. Remember that God did not tell him where he was going or how long he would have to journey before he got to his final destination. I can only imagine the thoughts that were going through his mind. But Abraham trusted God no matter how hard it may have seemed. It was at the very last minute that God stopped Abraham from sacrificing his son. Then the bible says that because Abraham believed what God had told him before, he was credited as being righteous. What I am trying to say is believe what God’s word says. Not what the doctors say. Psalms 103 says that “he heals all of our diseases.” Jesus was beaten on the cross and by His stripes we ARE healed. It does not say maybe we will be healed or only some people will be healed. Heb 10:23 “Let us hold unswervingly to the hope we profess, for he who promised is faithful.” God has already promised to heal all of our diseases. Baby Riley is included in God’s promises. God does not show favoritism. If He did it for one He will do it for Baby riley. Job 9:10 says “He performs wonders that can’t be fathomed, and miracles that can’t be counted.” If the bible says it then it must be true. Romans 6:18 “it is impossible for God to lie.” Jeremiah 1:12 “The Lord watches over his word to perform it.” It says that His word will not return to us void but it will accomplish what it says. James 1:6 “But when he asks he must believe and not doubt because he who doubts is like a wave of the sea, blown and tossed by the sea.”
Romans 6:10 says “God is not unjust; he will not forget your work and the love you have shown him as you have helped his people” Josh you and Becca have helped so many children to come to know and love the Lord. He will reward you for that. I think that the enemy would like to take your baby from you because of how many children you have helped come into His kingdom but the devil is a liar and a thief. God says what the enemy meant for evil He will use for good. “Remember every good and perfect give is from above” James 1:12 “Blessed is the man who perseveres under trial, because he will receive the crown of life that God has promised to those who love him.”
James 5:15 “And the prayer offered in faith will make the sick person well, the Lord will raise him up.”
Believe what the bible says about your situation and not anything other than that. Trust in God’s word not man’s.
My prayers and thoughts are with you as you go through this difficult time. I pray that the peace of God will fill you and you will Trust in His word and not on what the doctors say. Our God is bigger than any disease.
Linda & Steve Garcia
Becca & Josh,
It is so strange to be so far away right now. I wish more than ever that I was there to soak this up with you all, feel a piece of this pain for you maybe. I know that's impossible, but I still wish there was a way to take even an ounce off of your hearts. Or perhaps this isn't even valid, that maybe the heaviest thing on your hearts right now is hope itself. In that case, I have so much to learn.
I read that post below about the family with the 3 year old son with SMA type 1. I looked at the pictures of him and burst into tears. It all seems so impossible. Impossible hope, impossible patience, impossible everything. But I'm sure I just can't begin to know how God moves in this circumstance or how he moves through you both. Riley's life has been so celebrated and I know how every second with her is such an amazing gift.
I love you guys. You have no idea how much you're teaching me.
You are an amazing, blessed family. We love you. Count on our continued prayers. James can't wait to meet his newest cousin.
We love you guys so much, and you are such a huge witness to us of what it really means to rely on God. Riley is beautiful. We are praying constantly.
Love,
Zach and Amanda Wood
Josh and Becca,
Thank you for all that you are. Thank you for your strength and faith. Around every "diagnosis" or assumption, you both have always displayed so much love for God. We truly respect and honor you two and will do anything for you-like Lee and Lindsey said, we stand by you completely. We love you so much. Gary and Rachael
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