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.