Month: October 2017

Speak Out. Advocate. Care.

Tonight, I consider our journey one year ago and where my family sat one year ago, five years ago, seven years ago.  I think of the connections made in Bethesda last year at The Inaugural International Conference of the Deficiency of ADA2, discovering other families who face the same journey.

I remember each of you.  I remember your stories.  I hope that you continue to speak out to raise awareness and help in our fight against orphan diseases, dada2, and PAN.  Here are two stories that were shared during that time.

Please join us on November 24, 2017 for our 2nd annual Gala.  Tickets can be purchased here.

Brown Bear…

A year ago, I took this photograph.  It was the evening before Brown Bear day would be celebrated in Kelsey’s Kindergarten classroom.  It was a day that she looked forward to for weeks.  It was a day that she missed.

The memory of this moment lingers on as she was crippled in pain with red blotches all over her body.  Instead of creating memories of literacy and fostering her love of learning, Kelsey required a heavy dose of medication, a biopsy, and emergent medical attention.

As if she someone sensed this timeline, she decided to read Eric Carle’s Brown Bear, Brown Bear as her bedtime tale.  She marveled at the fact that her reading has come such a long way in a year.

“I remember not being able to read this story once.  I cannot even remember that time,” she stated with pride.

The words of Eleanor Roosevelt ran through my mind as Kelsey read.  “No one can make you feel inferior without your consent.”  No, Eleanor, they can not.

We celebrate the warmth of our home instead of the sterile hospital lights.  We are grateful.  We are hopeful.  We ask for your help.

We thank you for sharing in our quest for research and a cure.

Please join us on November 24, 2017 for our 2nd annual Gala.  Tickets can be purchased here.

Love…

All you need is love

A classic tune that reminds me of a dear friend.

This week, cancer took that dear friend’s life.  It is bittersweet to hear that song and remember her pretty face.  The world needs love and so much of it.  My friend’s legacy will live on and serve as a constant reminder to me of enduring and everlasting love for her daughter.

When I came home from her services, I could not help but play the Beatles song in my mind as I kissed Kelsey goodnight.  She was so adorable in her PJs and her Princess eye mask.  I sat with her for a few extra minutes and softly sang her the song as she slept.

I thought of my friend’s daughter and hoped that she was feeling the love, too.

Love is all we need.

If you’d like to share the love for PAN and DADA2, please join us on November 24 for our 2nd annual Gala.  Tickets can be purchased here.

Catching for a Cure

September has been a month full of surprises and adventures.

First grade for Kelsey, a new school for her brother, and challenges at many turns.  Kelsey’s dad coaches her brother’s team and I coach her team.  Amidst new jobs and responsibilities, some days we wonder what we signed up for and why.

Then Saturday, September 30th rolls around.  It was a day that reminded you fall is truly in the air.  The day was full of energy, emotion, and ease because the Britto agency did the hard work!  They organized a softball tournament on behalf of Kelsey’s Kaleidoscope, Inc. and our old-aged team showed up (median age of 60!).  Though most of us who volunteered to play had trouble walking when we left, the truth is that the generosity, a sincere sense of family, and absolute gratitude extends far beyond the field.

Twelve teams gathered at Pennypack Park on the Delaware this past Saturday to show off their softball skills and get the W.  We barely came up with a team, but we brought heart and gratitude.

We left with new friends, a renewal of former connections, and a true sense of what is right in the world.  It was truly a gift considering several of the weekend happenings.

We also left (as any charity event on our behalf seems to do) feeling the sense of reality and urgency of genetic, orphan diseases.

If you could have seen Kelsey, the picture of health dancing to Despacito, Can’t Stop the Feeling, and some other Pitbulf favorites.  She was just as any other six year old should be.

As my husband so eloquently spoke, 90% of the time, Kelsey is joyful beyond words and the life of the party.

The other 10% is the difficult and hidden part that haunts us.  The Wednesday morning needle that keeps her from feeling her pain, the visits, the scans, and the unknown that keep her family members up at night.  The why and the worry of an invisible, vascular disease that we fear will take over at any moment.  Those are the moments unseen, but those moments help us spread awareness, build connections, and continue to ask for your help in our cause.

No child or family should endure the pain and ailment of a child.  This weekend, The Britto Agency recognized this even more and certainly made her family feel welcome and full of gratitude.  The $9000+ raised in total is unbelievable.  We are forever grateful to all of you who played a role, large or small.

We thank you for your commitment, your generosity, and your support!