SMA Type 1 ~
I recently heard about an inspiring little girl named Gwendolyn.
Gwendolyn is 4 years old. She loves horses and butterflies (what 4 year old doesn’t)? She loves the song “Somewhere over the Rainbow,” and is super excited to be starting kindergarten in the fall. Gwendolyn is like many other little girls, except that she has SMA Type 1.
Gwendolyn has SMA Type 1, which claims the life of 80% of babies that are afflicted with it before their first birthday.
At age 4, Gwendolyn’s life is a miracle. Gwendolyn was born seemingly healthy, but now has lost the use of her muscles, and now is completely paralyzed (she communicates by tapping her fingers and using eye movements). Her disease is genetic and 1 in 40 people are carriers of the SMA gene.
There is no treatment and there is no cure. But there is hope. Experts believe that a cure is possible within the next five years, with adequate funding.
This is where we come in. A little while ago, I posted a giveaway for Lilla Rose hair clips. Holly Noble, Independent Lilla Rose consultant, is sponsoring a “Clips for a Cure” fundraiser for the Gwendolyn Strong Foundation, a non-profit dedicated to supporting SMA families, and finding a cure for SMA. The Gwendolyn Strong Foundation will receive 30% of all sales when purchases are made through this link.
The products are amazing; you can read my review here. The cause is important. One in every 6000 babies is born with SMA. Please consider purchasing a Lilla Rose products through Holly Noble’s page or the fundraiser link. Perhaps every time you wear your hair clip, you will remember how you are helping bring them one step closer to a cure.
As an added bonus, if you purchase three or more clips through the Fundraiser link, Holly Noble will send you a gift certificate for a free Lilla Rose item up to a $16 value.
This story about Gwendolyn’s affliction with SMA Type 1 was shared with me by Holly Noble, Independent Lilla Rose Consultant. She is advocating about this disease as more can be done for those born with it only when there is more knowledge. Please do all that you can to help in the fight against SMA Type 1 so that little children like Gwendolyn can spend their childhood loving butterflies and horses and not being sick and scared.
About Dawn McAlexander
I will say a prayer for sweet Gwendolyn. I love that name.
Twitter: mamanycnet
says:
She is absolutely ADORABLE, we have the same taste in music, and her story is absolutely inspiring! Oh – and I DO love Lilla Rose products also! This is a great story. Thank you for sharing… absolutely a cause worth helping and learning about. I have never heard of SMA Type 1, so this is something I would love to hear about much more often and hopefully we can help find a cure. What a cutie! Her eyes are gorgeous and I can see she has a TON of personality in that smile!!! <3
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Twitter: thespringmount6
says:
She is beautiful. I have never heard of SMA type 1 before but I sure hope they find a cure quickly. I will certainly come back and buy a clip as soon as I can
Debi@ The Spring Mount 6 Pack recently posted..Best Grocery List Apps for iPhone and iPad
Twitter: Royalegacy
says:
Gwendolyn, what a beautiful name for such a beautiful little girl. Prayers said for this little princess.
Danielle @ Royalegacy recently posted..Wreck-It Ralph: Theatrical Thursday for July 5, 2012
So many diseases, so little funding. I hope one day, there will be a cure for all.
Thanks for sharing this story.
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Twitter: tonygreene113
says:
Truly inspirational story off a beautiful little girl.
tonygreene113 @ 113tidbits recently posted..Apple vs. Samsung: This Time Court Orders Ban Of Galaxy Nexus Phone
This is so sad that this is happening to beautiful Gwendolyn. Life is so unfair sometimes! I will be saying a prayer for her!
I am Gwendolyn’s mom and I want to thank you so very much for sharing her story, talking about SMA and how Holly is helping to change it’s brutal statistics. We hope your readers are inspired to make a difference! One person, one dollar at a time. NEVER GIVE UP.
Twitter: thenewclassy
says:
What a sweet little darling you have! I will keep your family in my prayers.
Dawn
Great idea for a great cause to provide funding for those suffering from SMA. Sending prayers your way!
What a sweet little girl and an inspiring story of creating a valuable fundraiser to help others in need! Praying!
I have never heard of this rare genetic disease – thanks for bringing awareness to the cause!
Aww what a sweet story. SMA is a rough diagnosis
What a beautiful child. My good friend lost her twin girls to SMA when they were 5 months old and they were such beautiful, inspiring children. I wish Gwendolyn and her family health, love and happiness
Twitter: thenewclassy
says:
I am so sorry to hear about your friend’s babies.
Dawn
Twitter: LadyGDuran
says:
What a beautiful little girl. My heart breaks to read this story. She is indeed a courageous little girl, and a fighter also. I will say a prayer for her that she gets the most out of the life she is living.
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Many prayers for this darling little girl!
my prayers will be with you
what a beautiful little girl…those eyes! she will be in my thoughts!
Prayed for her right now!
I was amazed that 1 in 40 carry the gene. Here’s hoping for a treatment soon.
What an amazing girl and family! Thank you for bringing this to our attention. I clicked right away on the Lilla Rose clips. I will pray for them and hope for a cure to come quickly.
Twitter: Atheistnomore
says:
This is such a moving post. My thoughts and prayers are with this family. Its wonderful that people are working together and bringing hope. Two out of three of my children have had difficulties since birth and its hard when your alone in anything. Seeing this little girl makes you stronger and believe in hope.!
Twitter: http://www.sweetsbyscent.scentsy.us
says:
I have never heard of this disease and I hope they do find a cure quick! I will be praying for Gwendolyn and her family.
Such as heartbreaking disease. My prayers for a cure soon!
Twitter: lpninpain1
says:
She has got to have such a very strong will to live when this disease is so deadly. A while ago we had a local baby with a bucket list who died of this disease. I love that she loves butterflies they are one of my favorite things to watch as well
Twitter: HauntedDollie
says:
I’d never heard of SMA before reading this blog. My heart and prayers go out to little Gwendolyn and her family. What a courageous and miraculous little girl. I hope that all of her kindergarten dreams come true. I also hope that there is a treatment for her and children like her, soon, to make their lives easier and/or to cure them, as well as some kind of way discovered to prevent anymore children from being born with this devastating illness.
What an example she is–just happy to live and be loved. She brings joy to all with her smile and her beautiful eyes. God bless her. Those are beautiful clips too! I will try to get some.
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Prayers sent.
I had never heard of this disease before. Thank you for helping to raise awareness!!
mjp_0419 at yahoo dot com
Twitter: couponmaster11
says:
Thanks for sharing this story. It is really great of you to share your friends story. I will be praying for you friend and her child. I wish you all the luck with raising m0ney to help finding a cure.
What a sweet and brave little girl. I have never heard of this disease before. It is so incredible that you would raise awareness for this little girl. It is heart breaking to know that there is yet another aliment that affects another young child. My heart and my prayers go out to her and her family.
So heartbreaking. I’ve never heard of this disease before, and anything to raise awareness is wonderful.
Twitter: medictom
says:
Beautiful little girl, I have been a Paramedic for over 20 years, one of the hardest things I still have trouble with is sick or injured babies/kids, but stories like this remind me why I keep striving to learn more, I am adding this topic on a list of things to research to learn more about, and maybe pass on information to other paramedics so we are constantly learning.
Tom Shewbridge recently posted..Hers or His Power Wheel Event
My heart goes out to this little girl and her family. I’ve never heard of this disease before.
I had not heard of SMA. What a sweet little girl – prayers for her and all afflicted.
Twitter: rjs7777
says:
I had a child who had a near drowning while visiting his grandparents at age 13 months. I could write a book. I ran into so many diseases and children with horrible problems. It just isn’t fair. I think that there should be more research and so much more for children with disabilities. What a sweetheart for sure!!!
Beautiful little girl with a pretty name. Hoping for some cure to be found for her. I have never heard of this before. Its a miracle this sweet baby girl is still here with us. And tell her I love horses and butterflies to. God bless .
reading this was hard mt eyes were filled with tears for her I will pray for this sweet little angel
What a great story from a special girl with a neat name.
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Twitter: artzamy23
says:
My heart is broken for little Gwendolyn. I am looking through the Lilla Rose website now as I window shop for my little Valerie Anne. She is ten months old and is taking steps towards walking before reaching eleven months of age. My prayers are with the family.
That’s sad! But it’s great that there may be a cure coming!!!
What a sweet little girl- so sad!
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Twitter: http://areyoufinished.blogspot.com
says:
Thank you so much for sharing Gwendolyn’s story, I’m shocked that I’d never heard of SMA before!
awe shes so adorable and shes so strong! i have never heard of SMA before so thank you so much for sharing such an inspiring story. My heart goes out to her and her family. they are strong people
Oh I never heard of this condition. I hope a cure will be found soon!
I am keeping her in my prayers
keeping you in my prayers! So inspiring!
Thank you for bringing Gwendolyn’s story to us. Hopefully a cure will be found soon.
WOW…so sad!!! Sweet Gwendolyn and her family are inspiring. These clips are beautiful and such a thoughtful fundraiser!
I will be buying some jewelry to help with your cause. Good Luck.
autumn kelly recently posted..Happy Birthday Mom.
She is so beautiful and inspiring. I hope that a cure is found soon. Thanks so much for sharing her with us.
Inspiring and heart warming. this little girl is meant to be here!
I first learned about SMA from another beautiful little girl named Avery, I still think of her often. I will add sweet Gwendolyn to my prayers each night and continue to hope for a cure.
so sad… “(
What a precious little girl…that is so sad and hope that a cure is found soon. It is a great cause
This is the first time I have heard of SMA. Hoping and praying they find a cure quickly.
this is so sweet and she is SO precious
What a special little girl. I am praying for Gwendolyn and praying for a cure. I had never heard of SMA before reading this. My heart breaks for this child and her family. <3
she’s so blessed to have made it this far and i hope she continues! i will look into the lila rose site for the clips and i hope they’re able to raise enough to help, etc. it’s so inspiring to see little fight these battles!
praying for her, so many children affected by different disabilities
my heart goes out for u i had never heard of this ill pray
Prayers being sent. What a beautiful little girl.
Life is so precious. My own daughter just received a tough diagnosis so my heart goes out to this family
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Twitter: thenewclassy
says:
Sorry to hear about your daughter. I hope that everything turns out okay.
Dawn
wow hope they find a cure for the little one and then
do the research that is needed
Sweet baby, I will pray you get your cure soon.
Like many of the other commenters, I’d never heard of SMA. Sweet little Gwendolyn and her family are in my prayers.
Jan Messali recently posted..Back 2 School Bloggie Boogie Giveaway, Reading Kingdom
she is absolutely beautiful!
Genetics is such an amazing thing, how it shapes us, etc., but I am devastated to learn when a person inherits issue such as SMA.
Our very close family friend was born with SMA, too. The doctors said she would not make it into her teen years. She goes to the University of Texas now! She showed them! There is hope.
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Twitter: thenewclassy
says:
Yay! Thanks for sharing!
Dawn
Hope they find a cure!
How heart breaking AND yet so inspiring to see such a beautiful little girl make it this far in life! She is truly a blessing to her parents and those around her, and hopefully inspiration for life. Hopefully they will find a cure or at least something to help with this disease. My heart goes out to the family and friends that surround this tiny miracle!
God Bless!
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I had never heard of SMA until now. What a sad, but hopeful post. Thanks to Lila Rose for donating products to this cause and to you for spreading the word about such a devastating disease.
What a beauty! Thank you for bringing this to my attention. The truth is that I had to google SMA for information. I had no idea. I hope all the most beautiful things for little Gwendolyn!
It is a heartbreaking story! I will pray for her.
Bless her little heart <3 She is a true blessing!!
I am inclined to read up on SMA as I have never heard of it. Thanks for sharing her story.
I will read up on SMA.My prayers for Gwendolyn and all children like her
This is so sad! I am happy that you have became a part of the healing process in many different ways! Prayers for all her and family.
prayers to this sweet girl and her family
Such a moving story – so great that you are helping. Give your healthy children a hug and help those who aren’t!
This truly breaks my heart but prayers in groups will certainly help. I pray for this baby…God Bless Gwendolyn and heal her
So sad.. I hope a cure is found soon! Such a sweet little girl!
I’ve always wanted to try a Lila Rose clip, looks like now would be a good time.
I really hope a cure could be found for Gwendolyn and everyone else who has SMA.
Sweet baby girl, how heartwrenching……
Prayers said for this little princess.
Such a pretty lil girl. It really hurts the heart when our children are sick. Saying prayers for her and for her family. Love the fund raiser and plan on coming back and getting some. Wish I could do more. <3
What a great story about Gwendolyn and a great fundraiser.
I’ve never heard of SMA before. What a heartbreaking story and my heart goes out to that beautiful little girl and her family. **prayers**
Lilla Rose hair clips are gorgeous! What a great cause!
Sending prayers for this beautiful child. Thank you for raising awareness
So sad for her. More awareness will go a long ways to finding a cure for this genetic disease
What an amazing girl, she has more strength than I could ever hope for, I bookmarked the page to purchase clips for my daughter and I on payday. I wish so much for a cure-thank you for sharing this unknown (to me) disease and spreading awareness.
Twitter: jennjennthezozo
says:
What can you say to a story like that? Amazing and I hope that a cure is found
My prayer is that they raise the money they need.
Children are such a precious gift and they give the world the gift of themselves, as well.
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I have never heard of SMA before this…This clips for a cure is a great idea…Wishing Gwendolyn a prosperous life…
She is lovely. May God bless her !!
Awww, she’s beautiful and what a great thing you are doing for this little girl! We have a 4 year old in our family that has DIPG which is an inoperable brain tumor and I wish there was more hope for a cure. Praying for Gwendolyn and her family!
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What a Beautiful Priness She is…..Saying many prayers for her and her family, Mayyou feel the strengh of God’s arms wrapped around you all!!
I will pray for this very sweet awesome child and her family.
Wow! I just one a giveaway for one of these clips, but I didn’t know about this rep. I’ll have to buy my future things from them. Thank you for the info!!
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Praying for this beautiful child and her family. I too had never heard of sma but will definitely looking into it and trying ro help find a cure..