Happy 8th birthday Callie!

Callie enjoying our big snowstorm last month.

Callie enjoying our big snowstorm last month.

Callie is 8 today! She’s very excited about the big day, just like any 8-year-old would be.

Days like this remind us how normal our lives are, despite the time and effort Callie’s care requires. We have support from so many people — nurses, people who have given money, Hospice of the Piedmont, co-workers who generously prepare a meal for us every week.

We are grateful for this help because it helps Callie live a life that is not defined by her diagnosis. Life seems so normal that, sometimes, when someone asks how Callie is doing, it takes us a second to recall the details of her daily challenges.

This sense of normalcy has been disrupted over the past six weeks, ironically, by a piece of very good news. The FDA on Dec. 23 approved a treatment for spinal muscular atrophy. The drug, Spinraza, could be available for Callie this spring or early summer. Had this drug been available when Callie was younger, it might have rescued her from the devastating effects of SMA.

Now, though, SMA has twisted her spine. She has contractures, subluxations, almost no muscle mass. She is weaker and more vulnerable than ever. She can sit up for shorter time periods. She depends on her bi-pap machine for breathing support every day. This medicine has arrived too late to prevent these effects for Callie.

But her spirit is so strong, and we’ve learned not to underestimate Callie’s determination. So over the past few weeks, we have been considering whether this new treatment could help Callie even in small ways. We know it won’t reverse the damage SMA has done to her body. But could it help her stay in her power wheelchair longer, giving her more independence? Could it give her enough strength to sit up longer, which could enhance her quality of life by allowing her to interact more with friends and family?

callies-cakeOr would the treatment only slow the progression of her condition, requiring her to endure more pain with little or no benefit to her quality of life? There are no simple answers.

Next month we have an appointment with a neurologist, and we’re hoping he will provide some more information to help us determine whether this new treatment would be good for Callie.

Until then, she’ll celebrate her birthday with food from Barberito’s, one of her favorite restaurants, and a cake with a snowman family on it that Callie helped design. This coming week she’ll go to school hoping the cafeteria will serve her favorite lunch, beefy nachos. She’ll watch her favorite shows, Sofia the First and Phineas and Ferb. She’ll draw pictures, tell jokes, and live her life.

22 thoughts on “Happy 8th birthday Callie!”

  2. Debbie Hudgens

    Callie, I love your cake!!! A happy snow family is just perfect for the winter. Bet you’ve had some snow already this winter. I want some here in Ware Shoals! Hope your 8th birthday will be fun, fun, fun!

    Dad and Mom, How we praise the Lord that He has blessed each of you in marvelous ways and given you this time to enjoy Callie. I know her brothers help care for her, and that is a precious experience for each of them. They will have learned compassion and a deep sense of living a Christ-centered life.

    Campaigning for SMA to get the word out about the disease has, I’m sure, been instrumental in advancing the development of the medication. Although it has come too late for Callie, I pray that so many others will be spared the effects of SMA.

    Callie is a miracle, and God put her in the perfect family. I think of y’all often and pray God’s guidance and care for each of you.

  3. Linda Bell

    HAPPY, HAPPY 8th BIRTHDAY, CALLIE. I LOVE YOUR CAKE YOU HELPED DESIGN. AND I’VE LOVED YOU FOR SEVERAL YEARS NOW, THOUGH WE HAVE NEVER MET IN PERSPON. YOU ARE AMAZING AND DELIGHTFUL. GOD BLESS YOU AND YOUR FAMILY EVERY DAY. ????

  7. Ella Jones

    Happy Birthday sweet Callie, I hope you have a very special day. If you lived in Greenville with your grandmother Lyn you could come to church with me on Wednesday nights and be a Ga, just like you mama, and you aunt Shelley and Alicia. I would love having you. You are on the GA prayer ?? list. And I keep you and you mama in my thoughts ?, in my ?? prayers, and in my heart ❤️. You and your mother are very special to me. Christy and Callie I love ❤️ you bunches.
    With love your sister-friend,
    Ms. Ella

  8. Sheri Fricks

    Happy Birthday, Callie!! I love your Snow Man cake. Praying for you daily and hope you have a wonderful week. Keeping my fingers crossed for the Beef Nachos.

  9. Susan Burge

    Happy birthday, Callie! You are a beautiful girl with an even more beautiful spirit of determination and courage.
    Susan and Randy Burge

  10. Jason Ross

    Happy birthday sweet girl! That cake sure does look great. Aunt Shelley,
    Kaiden and I love you!
    Uncle Jason

  13. Bob Drake

    Happy Birthday sweet Callie. Hope you have had a great birthday…..love your Snowman Birthday Cake@

  14. Lori Travers

    Wow! 8 years old! I remember when your mommy was pregnant with you precious Collie!
    Well, Mama, you just never know if God will do a miraculous work in her body! We always hold on to that hope, don’t we? Or God is a healing god Jehovah Rapha. He is able to do exceedingly abundantly more than we can ever ask or imagine! It is his power that’s at work in all of you and in Callie’s Body. Never underestimate!
    Such a blessing to have so much support too! You are loved and that is so very valuable going through this time. Thank you for sharing your life with us!

  20. Lydia Buchanan

    Happy Birthday, Beautiful Callie! You are such an encouragement and inspiration to me and many others. Praying God’s richest blessings upon you and your family today and every day. Love, Hope and Snowflakes of Blessings! ❄?❄

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