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Friday, September 14, 2012

I want to tell you about Lucy

I want to tell you about my little friend Lucy. She’s three years old and she is funny, feisty and loving. Really loving. Like, if she met you right now, she would tell you how much she loves you.

Lucy is also the person in my life who I think about when things get hard or stressful, or at least when I think they get hard or stressful. All I have to do is call Lucy and her family to mind and I instantly gain perspective. You see, Lucy has a terminal and degenerative genetic disease called Spinal Muscular Atrophy (SMA). She can’t walk. She can’t eat. She can barely breathe. And yet she is LUCY. She has this amazing little brain that works just like yours and mine. She loves using her iPad (which, by the way, has opened up the world to her). She loves to go swimming. She loves the Disney princesses. She loves to swing on the back porch with her brother and sister in the special swing her grandpa built for her. She likes to drive her special chair ALL BY HERSELF. She is just like any three-year-old, except her body just doesn’t cooperate.

Lucy’s parents Chad and Cherisse are amazing. They have the tremendous task of caring for Lucy, and they do so with tenderness and love, just as any parent would. But, actually witnessing their care, on both good days and bad? It is a true inspiration and a reminder of the great love and great good we are all capable of. Even with all the care that Lucy requires, they still have strong relationships with their two older children, who adore Lucy as well. Cherisse’s Instagram feed does a heart good, let me tell you. Getting a peak into their day-to-day, the small moments Lucy has with her siblings, it’s beyond touching.

Lucy is a miracle. She was diagnosed with type 1 SMA (the most severe form) as a small baby. At the time of diagnosis, the doctors said Lucy would be lucky to see her first birthday, which was hard for Cherisse to believe looking at the baby in her lap. It became clear as time went on, however, that the disease would overtake almost all of her abilities.

And yet…Lucy is a miracle. 90% of SMA Type 1 babies don’t make it to their 2nd birthday…and Lucy is a trooper of a 3-year-old!

SMA stinks. Lucy is the second child I’ve personally known who has this disease. I’ve been wanting to tell you about Lucy because, well, I love her story. But I also want to help Cherisse spread the word about SMA. I love this infographic from the Gwendolyn Strong Foundation that gives a fabulous summary of the disease:

spinal muscular atrophy summary

Here is SMA in a nutshell: it’s degenerative, it’s the #1 genetic killer of infants and young children, it affects the body’s ability to function in just about every way and yet the brain is never affected. But here’s the sort of magical thing about SMA…research of this disease could truly do wonders. Treatment and cure is plausible and, if discoveries are made for SMA, that research could help with the treatment of hundreds of other genetic diseases and neurological disorders. (To read more about SMA, click here!) 

Have you ever seen the This American Life tv show? It is as great as the podcast, and my most favorite story from the series is of Mike Phillips. Mike was diagnosed with SMA at age 9. He was 27 when This American Life told his story. He always said that if he could talk, he would want to sound like Johnny Depp. Awesomely they got Johnny Depp to narrate his story, a story that is amazing, haunting, sad, funny and will definitely make you cry. It gives such a unique insight into the mind of someone dealing with this disease.

Lucy has made a mark on this world. She has impacted many lives. And she is a beautiful reminder to all of us that each and every day we have on this earth is a gift. I am going to quote Cherisse here for a bit because, well, the words of Lucy’s own mother are more precious and powerful than anything I can come up with.

“I would not trade the world for this little girl that brings so much joy, love, hope and light to our lives. She is an angel in every sense of the word and I wish I could share her with the whole world. She has enough love in her little red heart for everyone she meets (and she will tell you that she loves you too, over and over again). I don’t think that our family will ever feel as loved and supported as we have while caring for this very special girl, my heart swells when I think of all of the kindness and love that has been shown to us. Everyday I think that my life will never be as stressful as it is now but then it won’t ever be as wonderful as today, another day (and everyday) that I get to spend with my three little ones and my sweet husband.”

If you’d like to help support SMA research, Cherisse is going to be running the Santa Barbara 1/2 Marathon to raise money for the Gwendolyn Strong Foundation, a nonprofit organization dedicated to the SMA cause. I would LOVE LOVE LOVE it if some of you could support Cherisse and help us fight SMA. Even if it’s just $5. Consider it your annual This Week for Dinner subscription fee or skip the pumpkin latte at Starbucks for a day. No pressure, just if you’re feeling it! Click here to donate!

And, have you seen the completely awesome Flight of the Conchords charity song? Really, you have to watch it. The whole thing (or at least start around the 5:00 mark). It will make you happy and the supremely catchy song will get stuck in your head. Let’s helpa helpa helpa the kids!


  1. Absolutely wonderful post about a remarkable family and their truly incredible little girl. Lucy steals the heart of anyone who meets her. Thank you for sharing her story and helping to change SMA for future families!

  2. 2
    Rozanne Povey

    What a great post! I have been following Lucy as well. The Lunt family blogsite is one I go to for giving me an “up” for the day. I had two grandsons with SMA. One left us at age 11 months and the other left us at 23 months. Like Cherisse, our lives were so blessed to know these two little boys. We are coming up on Ethan’s first anniversary “D” day. I hope to see a cure for SMA to save families the empty void that is left when they leave. Thanks for sharing Lucy’s story!

  3. 3
    Stephanie P.

    Great story, and I’m glad you’re sharing their cause. As someone with progressive, degenerative disease (2 kinds of muscular dystrophy, a host of other rare, incurable disorders, and a government that stopped paying for medication that kept me functioning last year), and literally DNA mutations not identified by science yet, I have learned just how hard it is for research to move forward.

    I really do not mean to be offensive, these are just MY personal thoughts, but as someone whose family and friends refer to as “inspiring” I can’t really describe in words what I’d give, after 15 years of illness, to be called normal.

    I do agree, when every day of your life something is taken from you, something you might notice immediately, or not, you appreciate the blessings you do have.

    • Jane Maynard

      stephanie, I so appreciate your comment for so many reasons. thank you. and, no offense taken – I can totally see where you are coming from and I’ve heard similar sentiments from people in your same position. in fact, cherisse and I have talked about how oftentimes people going through these types of situations always hear the line “I could never do what you do” which sort of makes them crazy since, duh, of course you would because what else would you do? I think what I love about watching this family day-to-day is just seeing how they face adversity with realistic expectations but with such humility and positive energy…it is a great pattern for me to follow. anyway, thank you! much love and happy thoughts for you!

  4. Lucy is beautiful!!! Thank you for sharing her story and helping us be aware of this disease.

  5. what a beautiful girl! her family must be amazing to be around. any special needs child, always puts life in perspective. it’s amazing how that works!

    thanks for sharing lucy with us!

  6. Thanks for sharing her story. What a beautiful little girl and an inspiration.

  7. Thank you for sharing this, such a beautiful and inspiring story!

  8. 8
    Dina Smith

    What a wonderful family whose members come from other wonderful families. Our love to you all. What an amazing story of love.

  9. 9
    Nikki CB

    Wonderful story, and what an amazing girl and family.

  10. What a beauty of a girl your friend Lucy is. Thank you for sharing her story!

  11. 11

    Yes, thank you for sharing Lucy’s story. What a tremendous amount of love that sweet family must have for each other! It definitely is what I needed to read tonight to make my stressful-life-that-really-isn’t-stressful put into perspective. I hope research moves and moves and moves to give answers to Lucy and other patients/families like this.

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