I want to share this story

[devonpow]

The Strongs are friends with good friends of mine from my home town . Their kids are the same age, and I have been following their story closely for the past 7 years.

Their daughter Gwendolyn was diagnosed with SMA ( spinal muscular atrophy) when she was only a few months old . SMA is the number one genetic killer of young children . It is similar to ALS/ Lou Gherigs. The body becomes paralyzed so that you lose the ability to walk, talk, eat, and breathe on your own - but your mind and cognition remain fine. It is fatal. There is no cure . Most kids with SMA die before they turn two.

This family is so amazing. Even with Gwendolyn as profoundly physically disabled as she was they were able to give her such a full, meaningful, joyful life. She was even able to attend public school the past 2 years and was quite the social butterfly.

Gwendolyn passed away this weekend, a few months before her 8 th birthday.

Her parents started a foundation a few years ago to help with SMA research and to help families living with an SMA diagnosis. Their motto is "Never Give Up". I wanted to share their website, which includes a blog of their journey.

thegsf.org/home/

Gwendolyn's memorial service is this Sunday, and they are encouraging everyone who knows about Gwendolyn to help celebrate her life by wearing purple , pink , or butterflies. So, I hope you read a bit about Gwendolyn, wear bright colors on Sunday, and think of her.

Thanks.

[imimahoney]

Thank you for sharing their story. I can't imagine how hard this must be for them.

[dbe100408]

Such a touching story. I can't imagine their pain right now. I will try to remember to wear bright colors Sunday.

Please bump this post as a reminder, if you're able, maybe Sunday morning?

[blane12]

Thank you for sharing. She sounds like an amazing little girl. Such a sad but touching story. Her family also sounds amazing.

[earlybird]

Thank you for sharing Gwendolyn's story. I bet she was an inspiration to those who knew her.

[Na]

What an amazing little girl. I will absolutely bust out the pink and purple for her.

[careyalis]

Thank you for sharing. I will think of that sweet girl on Sunday and keep her family in my prayers.

[katie]

What an amazing little girl. Thanks for sharing, we will be wearing bright clothes to honor her on Sunday.

[EnchantedSoul]

Her story is making its rounds on FB! Such a beautiful life and a wonderful family.

[chirpchirp]

Thank you for sharing. Such a beautiful little girl!

[jenbelle]

Thank you. This is so sweet and heartwrenching. I will wear butterflies for her on Sunday,.

[kdrake8]

Oh devonpow. Thank you for sharing. What a beautiful girl.

[spaghetticat]

Thank you for sharing.

[fusion]

so sad I can't even imagine

[ladydi]

Thank you for sharing. I can't imagine going through that. It's wonderful she got to live such a full life in the short time she had.

[fryjack2]

They sound like an amazing family. I'm sorry for their loss and also thankful for Gwen's life. Not only did she bring joy to so many people, her parent's foundation will help other kids diagnosed with this awful disease.

[laurensmomma]

What an amazing little girl. Thank you for sharing. We will make sure to wear her colors this Sunday.

[carawestt]

She sounds like such an amazing little girl. Thank you for sharing her story.

[nannerl]

devonpow, I'm so sorry. I heard about Gwendolyn's passing from my mom-- she is involved with a foundation called Fight SMA that my aunt and uncle founded when my cousin was diagnosed. It's a horrible disease that affects too many families. Your friends are exceptional people and I will be sending them all the good thoughts in the world.

[creamsiclechica]

Oh Devon, I'm so sorry for your loss an their incredible burden of grief. What a beautiful little girl. We will all wear our colors and butterflies Sunday.