Tuesday, March 4, 2014

Nella's Story



This is a very special post and is very close to my heart. 

I am starting a monthly series called Wonderfully Made Series. 

Why is it called that? It is called that because of this verse right here:

 "I praise you because I am fearfully and wonderfully made;
 your works are wonderful,

    I know that full well." Psalm 139:14 


Every story that I will share each month is of a beautiful and strong child that is without a doubt fearfully and wonderfully made with love, with beauty, with a purpose. 

Whenever I used to hear about a child who was sick before I became a mother it would make me sad. I would be sad for a little while, but never was I affected the way I am today when I hear about a child who is sick. Now that I am a mother it is a whole new story. When I hear about a child who is hurting or who is ill it hits me hard. It takes my breath away. I look at my baby and think “what if” what if that was my baby? What would I do? Just the thought is enough to bring me to tears.

I have that “mommy heart” now. The kind of heart that has turned into mush at the sight of my son’s smile, and at the sound of a baby’s cry, and the kind of heart that wants to build a shield around my son’s body to protect him at all times. That is why I want to do this series. I want to focus on those diseases out there that are affecting children because: 

It is important for us, as mothers, to be educated on these things. 

It is important for us, as mothers, to support those other mothers out there who are going through the unthinkable. 

The illnesses and diseases out there that have little attention to them have no cure, no money for research, no treatments, and these babies need our voices and our mommy-hearts to cry out for them since they are unable. We need to use our momma-bear voices to scream out for the children and parents that cannot do so right now. We need to bring attention to the things that continue to go unnoticed. What a change we can make if we just speak out on these important issues and educate educate educate.

So, each month I will share someone’s sweet baby's story. A story with a disease or an illness that needs attention drawn to it and I ask my sweet and amazing readers to please share these stories far and wide. Spread the information you learn and take heart to the words that will be written because you never know who it could impact or who it could help. 

These stories will be hard to read, especially as a mother. I know they are and I know our instinct is to turn away because it is too hard to read, it is too hard to think about, but that is the very reason we should read these stories and educate ourselves, so maybe one day there will be less of these stories. We need to be the voices and the strength for these mothers. We need to be on our knees praying hard when they are too tired to kneel. We need to be raising up and speaking out when they are unable to speak due to dealing with the unthinkable. We are mothers. We are a team. 

Today and the month of March is dedicated to sweet Nella and her diagnosis of SMA type 1.


This is Nella’s story. 

It is a story of faith, a testimony of nothing but pure love, strength, and perseverance from a beautiful and strong family. It is a story of a beautiful little girl who has already impacted thousands. Nella’s family has taken a tragic situation, unraveled it and molded it to reveal God’s blessings in the little things, to show God’s love through a clouded picture. They don’t know why this happened to their little girl, but they move forward and they trust in the Lord. They truly are an awe-inspiring family. 

Picture by: AOH Photography

I do not know Nella personally. Actually, I do not know anyone in Nella’s family personally, but I found her story through a mutual friend of ours. I saw Nella’s sweet face appear on my Facebook newsfeed one morning several months ago asking for prayers for this precious baby and clicked on it to find out more. Why were people praying for Nella? What was going on? 

What I read shook me to the core. 

Nella was born August 7th, 2013 and she was beautiful and perfect. She was healthy and thriving! She went home and started her life with her parents and brother, just like any other healthy newborn. 



When Nella was 11 weeks old her family noticed that there was some regression in her strength. She was seen by a pediatric neurologist and on November 5th, 2013 it was confirmed that she had Spinal Muscular Atrophy (SMA) type 1. SMA is a terminal genetic neuromuscular disease. 80% of babies diagnosed with SMA type 1 do not live to see their first birthday. 90-95% do not live to see their second birthday. There is no cure for SMA type 1. Infants with SMA suffer from severe muscle weakness and atrophy of voluntary skeletal muscles. Nella's FB page explains SMA like this, "Simply put, infants with SMA become weaker and weaker, which eventually affects every muscle in the body hindering the ability to walk, sit, stand, eat, swallow and even breathe."

Here are some surprising facts about SMA that I was not aware of and that I think every parent should be informed of:

SMA is the #1 genetic killer of young children. 
SMA affects 1 in 6,000 births. 
1 in 35 people, or nearly 8 million Americans, unknowingly carry the gene mutation responsible for SMA. 

Nella’s family took her home and decided to make a place of comfort and love for their sweet little girl for whatever time they have left with her. They have turned their living space into her nursery and they have made each and every moment count for their precious family. They celebrate the small moments, the big moments, and the every day moments. They celebrate LIFE and God’s LOVE. Oh, how I wish we could all have that attitude every single day of our lives. 

Photo by: AOH Photography

Photo by: AOH Photography

Nella’s life is full of celebration and full of sunshine from her family. The Grutter’s opened up their hearts and their story to the world through their Facebook page for Nella and allowed us to take a peek inside and it has been a saving grace for me. 

Celebrating Nella's 6 month birthday! 

One of Nella's favorite past times is swimming in the bath! She can move her arms and legs a little when in there! Love that she is still sporting her bow while in the tub. What a lady!

My heart ached for Nella’s mommy when she wrote about having to stop nursing her when Nella needed a feeding tube. She knew it was best for Nella due to chances of her aspirating, but I cannot imagine how hard it was to end that nursing relationship sooner than you anticipated and due to those particular circumstances. I must say, it is obvious no connection or no bond was broken when you look at pictures of Nella and her mommy together. When Grace shared that on her page my heart broke. I held Eli a little tighter that night as he nursed in the wee hours of the morning. My frustration with his night wakings softened and I as I cupped him close to me I thanked God for him and thanked God for the Grutter’s who helped me to understand patience and to understand to count the blessings you have - such as waking up with your baby countless times to nurse in the middle of the night. How blessed I am to be able to do that.  



A picture of Nella hangs on our fridge and when me and Eli go to get our breakfast or our snacks (or other variety of foods that I tend to eat all day long) we stop and pray over her picture. We are reminded again of that family in Missouri who are so impactful and we are reminded again to slow down and count our blessings and to soak up our time with one another and to just simply put, love. 



The Grutter’s do not know how much longer they have with Nella and you will see on Nella’s page that Grace and her husband share their uncertainties, their fears, their loves and their every day moments with Nella and you will see that they continue to move forward and to make the best out of the situation they have been given for their two beautiful children that God has put into their lives. They are inspiring and they are strong. They are scared and they are real. They allow us to see that, but you will also see they look beyond those fears and place their hope and trust in God even when God's plan is so unclear. What a testimony and what a blessing they are to those of us watching. 

So, what can we do? What should we know?

  • Get informed. Read up on SMA HERE. 
    • Did you know you can be tested for the gene to see if you are a carrier?  Ask your doctor about carrier testing! If you and your partner are both carriers of the SMA gene every single pregnancy has a 25% chance of producing a child with SMA. I think it is a big decision to decide if you are going to get tested for the gene because you need to know what you will do with the results if you or your spouse (or both) are carriers. Will that impact your decision to have children? 
  • Know the warning signs. Know the symptoms. Know what to look for. 
  • RAISE AWARENESS. Share sweet Nella’s story. Let others know about SMA and what they can do. The more awareness that is raised the more attention this disease will get. The more attention the disease gets then the more funds that will come in and the more funds that will come in will hopefully result in more research, which will hopefully result in a CURE! 
  • Pray. Pray for this sweet family. Lift them up when they cross your mind. Pray for Nella to find comfort when she is uncomfortable and strength for her family for those times when they feel there is no strength left. Pray. Pray. Pray. 
  • Show some love. Spread the love. Shower Nella’s page with love and support! You can find Nella’s FB page HERE. 
  • You can also order wristbands in support of the family and of Nella and all proceeds go directly towards the Grutter’s. You can order those HERE.
  • Send Nella a card! You can send Nella a card at the address below: 
Nella Evangeline
PO Box 28567

Gladstone, MO 64118



I don’t know why this stuff happens to innocent babies and children. I don’t know why someone so small and so precious and so, so innocent has to suffer. I wish I knew why, but I don’t. 

This is what I do know…


I do know that Nella has impacted and moved others in more ways than most people ever will in the 6 months that she has been on this earth. 

I do know that Nella has moved and changed my heart in ways that I never knew possible from just knowing someone’s story through social media.

 I do know that Nella’s story will continue to change and move those around her now and for years and years to come.

I do know that God is moving mountains through Nella. 

I do know that she is loved.

I do know that God placed an amazing family around her and that they surround her day and night and hold her up. 

I do know that she will never not know what love is. She is loved by thousands. Love will never be a foreign concept to sweet Nella. 

God blessed Nella with an amazing family, but even better, God blessed an amazing family with one amazing Nella

Thank you to the Grutter’s for letting me share your story. You are all changing lives. 

To find out more about how you can help the Grutter's during this time please check out my Instagram page HERE for a fun auction we are putting on for Nella! 



Do you know of a disease or an illness that needs more attention brought to it? Do you want your story to be featured? Please email me at soundsofmypitterpatter{@}gmail{dot}com. 

with love,

Kristin

32 comments:

  1. This was a hard story to read, but thank you for sharing this story and spreading awareness for the disease. Visiting from the Great Blog Train blog party.

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  2. Such a beautifully written post. My heart aches for their family, but it's such a great reminder of how blessed we are. Of how we need to keep our patience always even during the most frustrating of times. And to let our little ones only know love.

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  3. I have added Nella and her family to my prayer book. You're right. This series will be difficult, but holy trumps difficult every time. God bless your efforts.

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  4. What a gorgeous little girl she is! Wonderfully written, Kristin. Nella and her family will be in my thoughts and prayers! Thank you so much for sharing with us xo

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  5. What a beautiful post of strength in tragedy. Such a beautiful little miracle girl. My prayers are with Nella and her family. I sincerely thank you for sharing your post with us at Wake Up Wednesday Linky Party. We all need reminders at times about the blessings we receive each day and take for granted.
    Angel

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  6. Beautifully written!!! Awareness is so important. Praying daily for sweet Nella and her family!

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  7. Beautifully written!!! Awareness is so important. Praying daily for sweet Nella and her family!

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  8. I definitely know what you mean by "mommy heart". I couldn't get through this post without tearing up and kissing my little girl multiple times. Such a wonderful little girl and family, thank you so much for sharing their story. I can't begin to imagine, my heart goes out to them.

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  9. I am speechless. sigh...ok beautifully written and expressed. What a heartwarming story of one family's journey. Psalm 139 has always been near and dear to me and the words sprang to life even more so when I became a mom. Joining with others in prayers for Nella. Checking this out on ducks n a row link party!
    Cathy
    www.threekidsandafish.com

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  10. Quick observation... The zip in the address to send mail is 64118!

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  11. Quick observation... The zip in the address to send mail is 64118!

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  12. Great post, Kris! I think about Nella daily. You may actually know her mom...in middle school/high school she went by Gracie Fenger, don't know if that rings a bell. Anyway, thanks for sharing her story! Glad to see your family is doing so well :)

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  13. I know Nella's Grandma and daddy. What you shared was well done. We all should be thankful for all our blessings no matter how big or small. Again thank you for your wonderful insight and keep on sharing.

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  14. This was so well-written. You are doing such a great thing, mama! The most positive of thoughts is being sent to that adorable little lady & her sweet family!

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  15. What a sweet, sweet baby...we will pray for Nella and her family!

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  16. What sad but sweet post! She will be in my thoughts and prayers!

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  17. I have Mommy Heart too and this story is heart breaking - but she is a gorgeous little girl and I will keep Nella and her family in my thoughts.

    I think this is a wonderful idea for a post series so thank you for sharing.

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  18. This is such a beautiful girl and a wonderful family! Sending up prayers for them!

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  19. Oh what a sweet baby! My heart and prayers go out to Nella and her family!

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  20. What an amazing family & post! My thoughts and prayers go out to Nella & her family! Thank you for sharing on Whatever Wednesday at Thank You Honey! Hope you have a great week!

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  21. Thank you for this story, although not easy to read. I will join the prayer team for this family! ♥

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  22. Beautiful post, and so well said. Thanks for sharing this and I will certainly pray for Nella and her family.

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  23. Oh my, this is so sad! Thank you for sharing this story with all of us.
    I tell every day that the thing I am most grateful of is that my son is growin healty, but reading all of that really gave me a new level of awareness.
    Michela

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  24. Hi Kristin!

    I donated an item for your insta-auction, and just posted about Nella's Story and your auction here: http://nonchalant-living.blogspot.com/2014/03/nellas-story.html

    I hope this helps raise more awareness and support for Nella and SMA type 1!!

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  25. Your "boxcar" (this wonderful post) received the most "clicks" on the March Great Blog Train blog hop & is being featured on my blog today: godsgrowinggarden.com
    Thanks
    Angie

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  26. oh gosh. crying. my thoughts are with this family. My daughter was born only two weeks after Nella.

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  27. Prayers from Iowa for this beautiful baby girl and her family. I am bidding on several items on the auction.

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  28. I've cried a little each day since I've learned about Nella's story. She is beautiful and her family is an inspiration. Their love and strength is amazing. I pray for nothing but the best for them and for little Nella!

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  30. Great write-up! Writing is a talent, and it must not be wasted. As with everything that we had been entrusted, we should

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    ReplyDelete
  31. Great write-up! Writing is a talent, and it must not be wasted. As with everything that we had been entrusted, we should let it grow and share it with the world.> life long learner

    ReplyDelete