Thursday, May 8, 2008

A preliminary diagnosis


I don't quite know what to say. The words won't come together and when I look up to try to find words, all I see is the whole room spinning around me.

We have a preliminary diagnosis of what Nathan has, but the elation I felt earlier because someone was actually confident that they knew what was wrong with my son was quickly clouded when I came home and looked up that diagnosis. It's not the news we were hoping for.

Nathan's neurologist took about 3 minutes of observation before he was pretty confident in what he has. He thinks that Nathan has Spinal Muscular Atrophy (SMA). All of his symptoms point to it...the biggest being his retracting and hypotonia in his trunk area (shoulders, upper arms, chest and back). He also has little or no reflexes in his deep tendons. SMA is a genetic degenerative nerve disorder, and there is no cure. It is fatal...usually within a couple of years when diagnosed this early. It physically hurts me to write that.

The neurologist's next guess was that he could have Myotonic Muscular Dystrophy because it is the only form of muscular dystrophy that shows up in the neonate period. Although it is at its most severe form when diagnosed this young, the definite prognosis doesn't seem to be as harsh to swallow as SMA. But Nathan only has a couple of the symptoms of this disease. The Dr. ordered the genetic test for MMD as well, but after his observation of Nate, he focused more on discussing SMA.

He never mentioned the longevity of life with SMA. And I never asked. I asked how it could be treated, and he said that we would treat the symptoms from it. I was fine with that answer. In fact, I was just so excited that he seemed to know what was wrong with Nathan. After the countless doctor appointments leading up to this, he was the first that seemed to know what our son has been suffering from. He said that Nathan does not have a severe form of this disease right now. He never mentioned that it was degenerative and progressive. I'm sure he knew I would find that out myself. He did say that SMA shows normal or slightly elevated CK levels from blood tests, while most muscular dystrophies show extremely elevated CKs...and we know that Nathan had normal CK levels at his last blood test.

Nathan stopped rolling over a little over a week ago. He was rolling from his stomach to back about 3 or 4 times a day and then he just stopped. He is also no longer able to sit in the bumbo chair...he just can't get a deep breath when he is in it. I've worried about these things over the past week, and they all kind of make sense now.

The neurologist ordered a genetic workup...10 vials of blood were taken. That was the most traumatic experience he's had since the spinal tap. It was so much blood that his veins kept collapsing and clotting. On the third and last stick, he screamed and looked at me with eyes I didn't recognize. I just wanted to yank him up and run far away. The doctor also ordered an EMG and needle nerve test that will be scheduled at the hospital soon. But we won't be completely sure of Nathan's diagnosis until we get the genetic blood work back...in 5-6 weeks. A month and a half. How do we wait that long?

I was so excited on our way home. Someone knew what was wrong with Nathan! And now I just wish that I could rewind today and never have to live through it again. My eyes are swollen. My chest hurts...I just can't breathe. My arms are tired and weary from holding Nathan all day, but I just can't seem to put him down for long before my arms ache to hold him again. And as soon as my eyes fill to the brim with tears, he always smiles at me with those big cheeks, his sweet dimple, and those eyes that pierce through my heart.
I pray that the genetic tests disprove the Neurologist's preliminary diagnosis. But if that is not the Lord's will, I pray that we will be given strength...and I still pray with everything in me that Nathan be healed.

80 comments:

Christine on May 8, 2008 at 9:00 PM said...

I am praying for you all. I am at a loss for words...my heart aches for you right now.

Toni on May 8, 2008 at 9:02 PM said...

Huge Hugs Amber. I am speechless and feel like I have an elephant on my chest after reading your post. I can't even express in words how I feel. Your family is in my thoughts and prayers.

Kim on May 8, 2008 at 9:25 PM said...

Praying along side you.

mollie on May 8, 2008 at 9:26 PM said...

Amber we love you guys and are praying for you. My words are inadequate, just know that our thoughts and prayers are continually with you.

A Single Mom's Life on May 8, 2008 at 9:30 PM said...

Oh Amber...my heart and tears go out to you. I am praying for him and your family. I wish that I had the words to make you feel better..but I know nothing I can say will help. So I will just pray {{{{{{{{{}}}}}}}}}

september on May 8, 2008 at 9:32 PM said...

(((Amber & family)))

Reading this I feel as though someone kicked me in the stomach and I can't even imagine what you're feeling. My heart just goes out to you for the hardship that you all are going through. You're a brave woman and Nate is lucky to have you as a parent and advocate. Just take it one step at a time and don't look past the here and now. I'll be praying for you and your beautiful little boy.

Anonymous said...

My heart is aching for you Amber. Prayers and more prayers! CYE.

Gin

mandi on May 8, 2008 at 10:17 PM said...

We've never met & I'm not even sure if I've ever visited your blog, but Amanda told me about Nathan & asked that I pray ... please know that this stranger joins in with your friends & family in praying for you, your family & your son this evening (and will continue). Looking at his pictures & his sweet smile I simply can't believe that his little body is sick - so I join in praying that the tests disprove the preliminary diagnosis.

Casey on May 8, 2008 at 10:27 PM said...

my heart is aching for you :( I'm praying for you guys

Pam on May 8, 2008 at 10:30 PM said...

Our hearts and prayers go out to you, we pray his healing hand over your precious son, and peace for you and your family. My heart hurts for you....all our love.

StephthefutrRxDr on May 8, 2008 at 10:36 PM said...

Hi Amber, reading this is truly a shock for me. I've never met you, but from reading for blogs for these past few months I feel close to your family. I am at a loss for words right now and can only offer my prayers that this is not what Nathan has. Like someone else said, I also felt a huge weight on my chest when I read this. I will be continuously praying for Nathan.

Other Mother on May 8, 2008 at 10:57 PM said...

Oh, Jay and Amber, our hearts are so heavy for you all. We pray you will continue to feel God's arms tightly around you, day and night, and that He will hold little Nathan close in His hands. We will be praying for you all.
-Karen

StellasMommy on May 8, 2008 at 11:14 PM said...

Amber,
You do not know me but your blog came up on a google alert for SMA. I am writing to you because I am the mother of a child with SMA. I am praying that your little boy does not have SMA but if he does, I am writing to give you hope. The reality is that most doctors do not know a lot about SMA. Our little girl, Stella, was at Mayo in MN on this very day one year ago when we heard the things you were hearing today. They told us "weeks or months" and Stella just turned one year old in March. If you find out that he does have SMA (I'm praying he does not), please feel free to contact me at curesma4stella@gmail.com as I would like to share some really important information with you that can help your little boy. We went to three different hospitals before we got the things we needed to help our baby girl. We were told she would have to endure invasive things to live but we use non-invasive methods that help her and she's doing quite well. We remember that SMA is one of the closest neurological diseases to having a cure, so we have hope for our little girl! Hang in there through these tough days and let me know if you have any questions or want to chat.
Take care!
Hugs from Iowa,
Sarah Turnbull, Mommy to Treyton (3 and SMA-free), Stella (1 and SMA Type I) and Baby #3 (said to be unaffected)

Amy Bennett on May 8, 2008 at 11:17 PM said...

Here through Amanda...will pray for you and your family.

Kacey on May 8, 2008 at 11:22 PM said...

Amber, my heart aches for you and your family. I'll be praying for all of you and hoping for a better diagnosis.

Bloggy Mama on May 8, 2008 at 11:45 PM said...

praying for you and your family, Amber.

Michelle on May 9, 2008 at 12:12 AM said...

oh Amber I can't even wrap my head around this news...my eyes filled with tears as I read your words.

I can't believe the Dr didn't discuss any of that with you, and let you leave not realizing what it could mean for Nate, and for you to find out for yourself online. He should have prepared you. I'm sorry you have to wait so long for the results.

Please know Nate is in my prayers, and that this isn't the diagnosis. Praying that there is another answer to what is going on with him.

Becca on May 9, 2008 at 12:14 AM said...

Amber, I pray that our precious Saviour will give you and Jay special strength and the comfort that God heals.
1 Cor 1:3 Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort
We love you and are praying for your family.

Dawn on May 9, 2008 at 12:27 AM said...

Oh, honey, I am crying so hard I can hardly breathe. I am so very sorry, and praying for your family and your precious son. I love you.

Mama Martin on May 9, 2008 at 12:36 AM said...
This comment has been removed by the author.
Mama Martin on May 9, 2008 at 12:38 AM said...

Amber-
I'm not sure if you ever remember meeting me, but I am a former member of Bethany PB church and now my husband is the pastor at Macedonia in Cartersville. In fact, I just saw your sister at Bethany's spring meeting and we were talking about your sweet family. I have kept up with your family for a long time now so my heart aches and my tears are flowing at the sight of these written words. The fear and pain that you are experiencing must be unbearable because it hurts me tremendously for you. Yet, even through the worst of times, we are able to call upon our Lord to draw comfort. I pray that you do this. I pray that God gives you the strength you need. And most of all, I pray he heals your precious Nate.
Love,
Allison Martin

Gary B. on May 9, 2008 at 12:54 AM said...

Hey Amber and Jay, my heart grieves over the news. I don't even know what to write but for me singing has always been my way of getting through life's trials. "I need the prayer of those I love" "God has been my refuge daliy" "Show pity Lord" "Count your Blessing" "Some times I feel discourage". Amber we are praying for you daily for Nathan to be healthy and to give yall the strength each day. These songs have helped me in time when I needed encouragment when I felt lost. For me I have had trouble remembering scripture but a song that can swell my soul when all I see is the stormy waves has many times saved me from despair. Amber we love you.

Gary b and Danielle

joyfulnotes on May 9, 2008 at 1:29 AM said...

I was referred here by ohamanda. My heart aches for what you are going through. I pray that God will put His hand on you and your family, and that He will comfort you through whatever happens.

The Mom on May 9, 2008 at 2:13 AM said...

Oh I'm so sorry for your pain and having to deal with this. I will pray for your sweetie and send you strength.

((HUGS))

Emily on May 9, 2008 at 6:36 AM said...

I can't imagine that there is more gut wrenching news for parents to hear! I even cried as I read the preliminary diagnosis. Amber and Jay, please know that you and Nathan and your whole family are in my prayers. You mention that Nate can steal the heart of everyone he meets with his smile - well, sometimes he doesn't even have to meet them, as he stole mine just through his pictures! Lots of hugs and prayers going out to you all. In Christ's Love, Emily Tyson Zieser

Dana on May 9, 2008 at 7:29 AM said...

Amber,
Sometimes all you can do is "mourn with those who mourn and weep with those who weep." I have done that with you this morning, and I hope right now you can feel me hugging you and praying with you. Our awesome God can heal Nateman, and He is the healer of broken hearts. Please Please Please let us know if there is anything we can do to help you guys! My prayers for you will be frequent and very heartfelt! We love you guys so much!

Laura on May 9, 2008 at 7:49 AM said...

There are no words, Amber! I wish there were. I can't tell you how sorry I am. We will contine to pray for you...for Nathan...for your whole family!

Mom of TWO Princesses on May 9, 2008 at 9:07 AM said...

Oh Amber! I am praying for you, Nate & your family! Big HUGE HUGS to all of you!

Jodi said...

Amber, I don't have the words to tell you how much my heart is aching for you right now. I will be praying for your sweet family as you walk through this. (((Hugs)))

Lynn B. said...

Amber -
I am so sorry to hear the news about Nate. Please know that I am thinking about you and your family. You are in my prayers!
- Lynn

Kayla on May 9, 2008 at 9:55 AM said...

Oh Amber,
My heart hurts for you, Jay, and the girls. You have brought me to tears and I am humbled by your strength and trust in God. I only hope that I could be as strong as you have been if I were in the same situation. Know that I am praying for all of you. I pray the five weeks go by quickly and that you have a good outcome of the tests. I have been reading a lot about Gods greatness and faithfulness to us (his children) this week. I can't help but imagine him holding you and comforting you this week. Then he gently reminds you that he is faithful and in control of everything. We can't know what his ultimate plan for greatness is when we are in the midst of trauma or pain, but he is always in control. He sees you and has a plan. I pray you will continue to hold tightly to Him. Let me know if I can do anything for you.

Amy on May 9, 2008 at 9:57 AM said...

I will pray for little Nathan and the rest of your family.

Amy @ http://prettybabies.blogspot.com

MJ & Brenda said...

Hi, I am sorry to hear about your son Nathan, and his possible diagnosis. My name is Margaret, although everyone calls me MJ. I got a google alert about your post. I am 20 years old and I have SMA 1+. I also have an organization called B4SMA and I send kids with SMA blankets. I would love to send one to Nathan. I am also here to help answer any questions you and your family might have. I hope to hear from you soon. Love and blanket hugs to you all!
MJ and Brenda
b4sma_kids@yahoo.com

megan russell on May 9, 2008 at 10:46 AM said...

praying hard. can't imagine what you are going through. i look at my little guy in my lap and my eyes just well up with tears at the thought... trusting the Lord will strengthen and support you through this.

Kelly Spezzano on May 9, 2008 at 10:59 AM said...

We our on our knees in much prayer for Nathan, you, Jay and the girls. Not only do we have the Great Physician, but the Great Comforter! May the Lord grant you and the family peace to deal with all that may come, and a healing hand to touch baby Nate! We love you guys!

Anonymous said...

Amber,

I am praying for you and your family. My little Emma has SMA type 2. Gin shared your blog with me.

If you would like to "talk", please call or email me.

Huge hugs to you.

Amy mom to Emma Hope SMA type 2
www.emmahopeworld.net

natalie said...

I am praying for Nathan. God has brought you through the first trial with down syndrome and I believe He will bring you through this.

Katie on May 9, 2008 at 11:24 AM said...

Speechless. Will be praying. Have you called with more questions since coming home? I would want to know what type of SMA and why you weren't told more? Not wanting to give bad news is no excuse for a doctor, it goes with the job title...??

Merrie on May 9, 2008 at 11:41 AM said...

I just found your blog a few days ago and have enjoyed your beautiful pictures and stories of your family. I know God is watching over you all. Nathan and you all are in our prayers.
(((Amber)))

RebeccaT on May 9, 2008 at 11:53 AM said...

Amber and Jay, we add our prayers to all those already praying for your family for Nate. We pray for the Lord's strength for whatever you are faced with now and in the days ahead.

With Christian love,
Rebecca Thomas

Tara on May 9, 2008 at 12:07 PM said...

I'am at a loss for words. Please know that we love you. We are praying with you, for you, and are crying with you and for you. You have been such an incredible inspiration to me and you will never know how much our friendship means to me. I love ya girl and if there is anything I can do, you know all you have to do is call.

Tasha on May 9, 2008 at 12:47 PM said...

Oh Amber...god bless your little boy. He was sent to you for a reason, but my heart hurts for you! I cant even begin to imagine what you must be feeling. I will be praying for you and your family. Keep us updated, okay? (HUGS)

Amanda on May 9, 2008 at 12:58 PM said...

Amber I'm at a loss for words. I will be praying for you and Nate and the rest of the family. I can't begin to imagine what you are going through. God will give you the strength.

Dana on May 9, 2008 at 1:56 PM said...

We're all praying for Nate. i can't express how my heart aches for you.

pamela said...

Tears are streaming down my face after reading your post; I'm so sorry to read this news. My heart goes out to you, your family and especially your little man.

I'm praying for you all - that you are provided strength, direction and more positive news soon.

Beth on May 9, 2008 at 3:22 PM said...

Amber,

We have never stopped praying. May God bless you all with stength and grace. Words can't express how this breaks my heart.

Tearfully,
Beth J.

Anonymous said...

Oh, Amber, my heart is breaking. I have followed your blog and feel as if I know you and your children. I am the mother of two boys, so as a fellow mother, I'm sending you my strong, heartfelt prayers. I will send the link of your blog to all my friends, so they can join in prayer for precious Nate!

Laura

Tara on May 9, 2008 at 4:26 PM said...

I've never read your blog before today, but I had to comment. I'm so, so sorry, and you and your family will definitely be in my prayers. My heart is just breaking for you. My youngest boy looks to be about the same age as yours. I'll definitely hold him a little closer when he wakes up.

The Princess on May 9, 2008 at 7:44 PM said...

Amber,
Through tears I am writing this. I know that in a sense there is relief in knowing that this is a possible diagnosis; but I also know that there is a sense of concern and unknowing with it as well. Phillip and I have and will continue to pray for you all during this time. Daddy sends his love and prayers and mentions you guys weekly at Flat Shoals. He was also curious if you guys were in contact with any of the doctors in Jacksonville at Nemours. He had done a good bit of charity work with the Epilepsy Foundation when he was still down here and totally encourages you guys to speak with Nathan's doctors to see if that may be an option; they have outstanding neurologists there and are nationally ranked. You guys have a house to stay in if that ever is the case, and we can take care of the girls, too. With summer around the corner we can be available almost all day, almost every day. Please let us know if there is anything we can do to help. As I have said before, you and Jay and your faith in Him are a beacon of light to all of us. I, alone, have grown so much closer to God in watching your strength and faith in Him through all of this. We love you!
Ash

Elaine A. on May 9, 2008 at 8:49 PM said...

I came to your blog from ohamanda, although I think I have been here before.

I just wanted to say that I am praying for all of you, especially that sweet little baby son of yours. I am so sorry you are having to go through this. God is with you through it all. Prayers upon prayers...

Candace said...

Amber...I am speechless. I can not imagine the anguish this is putting you and your family through. The only thoughts that come to me are from 2 Corinthians 12:9, "My grace is sufficient for you, for my power is made perfect in weakness." God will give you the grace and the strength to endure this horrible test, and I will be praying for you hard and often and that God in his infinite power, goodness and love has mercy on Nathan and heals him.

Dana on May 9, 2008 at 9:05 PM said...

Amber, I will be praying for you, Nate and the rest of your family. I completely understand why you don't want to put him down.

Anonymous said...

Amber - this is Betsy, Bro. Sam Bryant's oldest....I haven't seen you in a very long time, but Amanda told me about your blog a while back and I have so enjoyed reading it and seeing pictures of your precious family. I have a daughter and a son and I have no words to describe the heartach I feel for you. As a mother, I can only imagine the fear and pain you must be feeling....and I have no words that might bring comfort, even though I've been sitting here crying and praying for almost 45 minutes. My husband and I are praying for you, Nathan, and your whole family - and we will continue to do so. Our God is THE giver of peace and strength and also the Great Physician. God be with you, Amber.

Jana on May 9, 2008 at 10:33 PM said...

Amber, My name is Jana Gundy and I have a son, Kyle, who is 3 1/2 yrs old and has sma type 1 as well. Kyle was diagnosed at 6 weeks old. It was devestating. But, I found out what i could to help Kyle live a full, meaningfull, happy life. What a life he has too! Yes, it's hard at first. He has a feeding tube, bipap to breathe with, suction because he has no swallow, we monitor his oxygen and heartrate at all times, but those are minor details compared his beautiful eyes and smile. Kyle looks at us and we know that he wants to be here. He's been to Disneyland and Disneyworld, lots of places and is very happy. SO, I just want you to know there are choices out there and it doesn't have to be a death sentence. Please, email me or call me should you feel like it. I am even willing to call you.
www.oursmaangels.com/kyle
918-260-0447
jana.kylesmom@gmail.com

Anonymous said...

Amber, I am a friend of Christine's, and have visited your blog many times. I just wanted to leave a note to let you know that I pray for your family. Valerie

shalonda on May 9, 2008 at 11:18 PM said...

oh my goodness amber i am at a loss...nothign i can say is worth anything right now but please know that my family is praying so hard for yours.

Anonymous said...

Dear Amber and Jay,
We have been keeping up with Nathan through Rachel and Marty at church. This is the first time I have visited your blog...it is absolutely beautiful. Your children are so beautiful.
My heart is heavy with the trials you are facing. I know the Lord is merciful and he doesn't lead us where he will not sustain us.
I will pray for you all. May the Lord give you all grace and peace.
Love, Diana

Mimigrace08 on May 10, 2008 at 12:08 AM said...

Your family is in my prayers daily.

-Emily Grace

Anonymous said...

Dear sweet Amber, Jay, and family,
A million tears and prayers are being sent your way from so many who dearly love you. We've been following your blog even before you became pregnant with Nathan and have found so much humor, so much faith, and so much love in it. We've prayed so many times for you as you've faced enormous obstacles. We've rejoiced with you also in the good times. Although our words cannot give you the comfort you need that reaches to the very depths of your soul, our God is Able and will sustain you in whatever else you face. Please know that we are praying fervently and continually for you all.
Uncle Travis & Aunt Geraldine

Anonymous said...

Amber, David and I are so sorry to hear your newest news, but we will pray for you even more than ever, as it appears so many others are as well. Love you all, Dawn B.

Anonymous said...

Amber,

My heart is breaking for you all. You are in my prayers.

Love,
Christy (CPBC)

Anonymous said...

First I would like to say that your family is just beautiful! Secondly, I am so sorry to hear you have to go thru this. It is very difficult and I will keep you in my thoughts and prayers. My youngest daughter (3 yrs old) has Type 1 SMA, but with proper intervention, she is actually doing well. At any time you need to vent, please feel free to email me at meb0810@msn.com or visit our website: www.our-sma-angels.com/jenna. ~Mary

Gina on May 10, 2008 at 12:06 PM said...

Amber, I am most definitely praying for you and your family - for the lab to get Nate's results quickly, that they are ACCURATE and that they give the physicians the answers they need to make some sort of definite diagnosis.

Gina, doodlebug mom

Staci on May 10, 2008 at 12:52 PM said...

I have been following Nathan's story on your blog now for a while and I'm just so torn up right now reading this. I will stand in agreement with you that God WILL heal him!!

God Bless!

Emily on May 10, 2008 at 1:35 PM said...

Oh Amber, my heart is heavy for you. Nathan will always be in my prayers.

Jill Chandler on May 10, 2008 at 2:09 PM said...

Dear Friend,
Words escape me now, but you are ever in my prayers.
Love, Jill

Amanda on May 10, 2008 at 4:20 PM said...

For we have not an high priest which cannot be touched with the feeling of our infirmities: but was in all points tempted like as we are, yet without sin.
Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need.

As parents to parents our hearts are broken with yours and we are praying that you will be able to find comfort in the Lord through these next few weeks. I know they will be the longest weeks of your life. And oh how we pray that your precious son will be healed. We love you.
Amanda and Jon

Owl of the Desert on May 10, 2008 at 9:10 PM said...

I am praying with you. God bless you all.

TracyVDM on May 10, 2008 at 9:16 PM said...

I am sorry to read this, Amber. I cannot even begin to imagine how you must feel. I just feel sick. I will be praying for you, as always. I know you are a strong woman of GOD and you will get through this! Please let me know if there's anything you need.

Call Family on May 10, 2008 at 9:23 PM said...

Amber, I am so sorry that your family is faced with this. I will keep you in my prayers.

Wanda on May 10, 2008 at 9:55 PM said...

May the Grace of our God be with you both for whatever is in HIS plan.
Wandy

melliehodges on May 10, 2008 at 11:00 PM said...

Dear Ferrell Family,

I have not been able to stop thinking about you and your family since I have read this last post. Words simply can not describe the hurt we feel for you. A friend who is going through a traumatic event in her life sent me this link and I thought about your family when I heard the song. We are praying for your family here in Roanoke, VA. God Bless, The Hodges Family

http://youtube.com/watch?v=Xd0HW3IelRs

Doris on May 10, 2008 at 11:30 PM said...

I just read this, and am so sorry. Continuing to lift you all up in prayer. God is good; he is able.


xoxo

Kate on May 11, 2008 at 4:36 PM said...

Amber My heart aches for you. I'm so so sorry. I will keep you in my thoughts and prayers.

Lori on May 11, 2008 at 6:50 PM said...

Hey, Amber --

My dear friend Rebecca Thomas forwarded the prayer request (posted on keepers-at-home) to me, and I sent it to every PB in my address book. It made my heart so heavy to read the e-mail and your blog entry about it, I wished I were close enough to give you a hug...I will e-mail you the Bible verse that first came to mind, about churches praying for you this morning...

In Christian love and much prayer,
Lori.

Jennifer on May 11, 2008 at 7:55 PM said...

Amber,
Although words seem to escape me, I just want you to know that we continue to pray for Nathan and your family.
Love,
Ronnie, Jennifer and Joshua

Liz on May 12, 2008 at 7:31 AM said...

I will be praying for you all, Amber. ..for him.

Nic on May 12, 2008 at 8:50 AM said...

There are no words... only prayer.

staceywoods on May 13, 2008 at 10:59 PM said...

sweetie i'm so sorry. i will be praying my heart out for you and nate, and your sweet family. i've had you on my mind and heart since reading your post earlier today. i'll stand in agreement that he will be healed too. if there is anything else i can do to help, please know all you have to do is ask.

xo,
stacey

princessmadiro on May 19, 2008 at 1:31 PM said...

I came across your blog through an SMA google alert. The same day my sister in Marietta GA was at her church and someone told her about you. I just wanted to let you know about my daughter Madison who has SMA type 1 and is now 11years old. She loves life and there is hope. You can visit her web site at www.miracleformadison.org
Feel free to contact me anytime.

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