#RareAsOne

Mark Zuckerberg, Facebook Founder, and his wife, Dr. Priscilla Chan, committed to the challenge, “Can we cure all diseases in our children’s lifetime?”  Daunting.  Amazing.  Fantastic idea!  Can they do it?  Here is to #hope…

On Monday, the couple announced one step in the right direction to conquer the challenge set forth in 2016.  They will offer grants to 30 recipients to advance research, training, and awareness.  Of the 30 selected, the dada2 foundation is one of the recipients to benefit from this large grant along with other resources over a two-year time period.

Wow.  We only hope our small community of dada2 patients grows and the resources lead to a cure for our girl and the many others we know with dada2.  Here is to hope and generosity in 2020…

#RareAsOne

B is for BRAVE

Brave has taken on a meaning that we will not ever be able to fully describe.  Over 600 headbands with BRAVE have been distributed in our community.

Over 600 headbands were designed by Kelsey, crafted by hand, and selected by Kelsey’s peers.  On Friday, it will be BRAVE day at Kelsey’s school.

We are overwhelmed by this simple yet powerful act of one teacher’s desire to help spread a message of hope and love.

The support, generosity, and kindness our family has felt during the past few months as a result of this headband is B for BEYOND compare.

Limited edition black bands with silver BRAVE are on order…

Thank you to ALL who have purchased a band, worn a band, or showed Kelsey support.

The season of giving is upon us, but the spirit of support and love are all around.

BE BRAVE #thisishowIbrave

Choose your Words Wisely

Mondays can be busy.  Even if we only have a few minutes between activities, we like to reflect on our day together.  The talk over our wardrobe change did catch us off guard this week…

“Today my feelings were hurt at school,” Kelsey said.

She elaborated, “this girl told me that her mom said I look silly out on the field.”  Then the same girl told me, “I wish you were not on my team.  You don’t deserve to be on it.”

HALT.  Deep breathes… Decisions, decisions…

The pause allowed for another moment we were not expecting.  Kelsey said, “Please do not get mad or tell her parents.  I told her that was really mean and it hurt my feelings.  Then I moved on.  I was with a few other friends and they all told her it was a mean thing to say.  It was really mean and really hurt my feelings, though.”

It hurt ours, too…

Later in the night, she further reflected to say, “it’s like we said when I had spots all over my body.  I remember when the kids in my class asked if I had chickenpox and they asked if it hurt.  I learned how to ignore it in my brain and say it is ok.  I never liked when people asked me about it, but I stayed brave.  I got this.”

Watch what you say, children are listening…

We discussed that we cannot change the way other people act or the words they choose, but we can choose our own.  Choose wisely.

Please spread kindness, respect, and love wherever you go today…

BRAVE

Brave.  Defined in so many ways and displayed by so many of us, young and old each day.

Kelsey recently read the book, Born Just Right .  She could not put it down.  Jordan’s story and her family’s journey is vastly different from ours, yet similar in so many ways.  Kelsey felt inspired to do something for herself and her disease after reading Jordan’s story because Jordan is making her dreams come true.  

Kelsey wanted to find an outlet and let her creativity shine, too.  For weeks, Kelsey wrote and drew ideas in her journal.  Kelsey was ultimately motivated by her new love of hand bands.  Her brother is also wearing headbands these days, especially those he sees on @bryceharper3

BRAVE headbands were designed and created by Kelsey.   Kelsey will proudly wear hers to her first day of third grade today.

Kelsey’s brother will also wear his BRAVE band today to signify his unity and provide support and strength for his sister.  He does not realize how brave he is each and every day, too.

Here is to a wonderful school year to learners of all ages.  

Be BRAVE, follow your dreams, and let Kelsey know if you would like a headband.  She would love to see you wearing one.