Maggie’s Story ~ Part 4 – CureSMA 16


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Please visit http://www.gofundme.com/heroes4maggie to see the original campaign by Brannon Pack and support Maggie.

Read more about SMA here –www.curesma.org/sma/about-sma/

Maggie and Kelly, God bless them, finally both recovered from their surgeries, travels and the crazy of all that happened in the first month of her precious little life. Finally, for the first time since Maggie was born, they were able to enjoy their new baby girl. Dressing her in her precious new outfits, taking her out and about to visit friends and family, you know, the stuff you are supposed to do after you bring a new little life into the world.

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For quite some time, it seemed, Maggie was doing great. We would have our regular family cookouts, summer swim parties and weekend card games. All was right with the world. She was just your average baby girl, although if you ask me, there is nothing average about her. She was always happy, always smiling and LOVED her kisses and snuggles. But I think my favorite thing, then, and even now, is her love of music. All of this is to say, that after her rocky start coming into the world, she was finally able to just be a normal mama’s baby. Or, daddy’s baby, if you ask him.

I don’t remember the exact time the concerns came, but I do remember the worry in Kelly’s voice. Maggie was a little late sitting up, and was still only army crawling around 10 months old. Some babies just bloom later than others, and you never even want the thought to enter your mind that something might actually be wrong. But when she wasn’t even trying to crawl, let alone walk at 12-14 months old, they knew something was wrong. I am having a hard time getting through even writing this, honestly, having to go back and think about it.

Kelly called me and told me about the initial appointment, and what they thought it might be. I remember there being blood work, and referrals to other doctors, and second opinions, and then more referrals. There were several appointments, with several different types of doctors and LOTS of waiting in between. I remember her coming over after one of them, sitting in the recliner in my living room, telling Aaron and I about everything they had done. I know for me, the pain in her voice and the tears streaming down her face and the quiver in her voice was the hardest part for me. Sitting there listening and there being absolutely nothing I could do. Nothing I could say to make things better or fix it.

When she was 14 months old, they started her in physical therapy for what was initially diagnosed as low muscle tone. Unfortunately, things did not get better, they got worse. Maggie had stopped crawling all together, developed swallowing and breathing problems and was referred to yet another specialist. On July 24th, 2014 Maggie was diagnosed with SMA Type II. If you do not know what it is, google it. DO your research. Imagine the shock, sick to your stomach feeling, that they had to have felt when they got this diagnosis. Their baby girl, not even two years old, would never walk.

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I still remember the pain in her voice when Kelly told me what it was. This time, we were on the phone. SO I could not see her tears, or give her a hug that I knew she needed in that moment. I had no idea what it was. I prayed immediately in my head that there was a cure, that something could be done. Please GOD do not let them, or her, have to go through this. Unfortunately, there is no cure.

While my story might seem sad, and I still pray every single night that they WILL find a cure for SMA, this story isn’t meant to be all sad. Maggie is seriously one of the most precious little girls I have ever known. She will brighten your day within an instant of being around her. She is still always smiling, always talking and always happy. She loves to sing and OH my does she love to dance! She also loves to drive and she is pretty good at it! She also loves her big brother Landon, who cannot be left out of this story. He is going to go through a lot, being a big brother. Way more than most big brothers would. And he has done an outstanding job.

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I hope that my stories have inspired you in some way! Please bookmark us to stay up to date with Maggie’s journey with SMA!

 

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Renee

About Renee

Founder of ThatsJustLife.Com, Contributing Author of The Mom Quilt, Blogger, Tech Guru, PR, Brand Management, and Business Development, and Staff Writer & Social Media Specialist at Element Associates. Over the last year, she has put a larger focus on community building, digital outreach campaigns and social media management. Renee is also an entrepreneur in network marketing and web design. Renee lives in Arkansas with her husband and two very busy and energetic teenagers. She loves meeting new people and taking on new challenges!


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