Author: New View for PAN

Still

Solace.  A time to be alone and think.

At six, I cannot imagine the complexity Kelsey feels at times.  Explaining to her that we needed to take pictures of her brain was a challenge.  I tried to explain the “boo boos” that have been noticed on her brain and how we wanted to monitor them and make sure that no new ones appeared.

It was hard to get those words out.  

Then we took a risk and thought we would try to approach the test without sedation.  Kelsey is brave and strong but laying for an hour calm and still at six seemed daunting.  We gave her the options and felt relief and worry when she choose to approach this sans sedation.  No IV, no pain from another needle made me less anxious, but still at six years old…

I sat and watched her sweet little body lay there for one solid hour.  She was calm, still, and patient for the duration.  She did not move once.

Heavy.  

To know she understands.  

To know she was brave enough to do it.  

Worry.  

An unsettling finding leaves worry, fear, and the deceptive face of PAN as a fresh imprint on the brains of those who know worry most.  

We pray.  We hope.  We are still.

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

Grateful to NBC 10 @Issue

Rosemary Connors and NBC10 @Issue, we thank you once again for your dedication to issues that matter most in the Delaware Valley.  We were grateful for the time, grateful for your assistance, and grateful for giving our organization a voice.

Thank you for helping make our issue @Issue.

Your Issue, At Issue.

An overwhelming week it has been.  The truth is, the high of earning a segment on @Issue with Rosemary Connors this weekend on NBC10 was a true highlight.  The professionalism of the entire experience was truly impressive and the incredible support we have received as a result are overwhelming.  When you have a bright spot, you want to celebrate it and savor it.

At first thought, I wanted to share all about that with you.  My initial thoughts were to describe the lights, the sounds, the excitement of TV and having a show care enough about our issue and the international mission we hope to tackle.  It was truly an experience.

However, life with a rare disease takes you to emotions that vary.  When medication is not issued and you feel a point of frustration that you cannot actually put into words, you feel more helpless than words can describe.  You cannot understand how a true need can become a transaction, and you cannot describe the anger, frustration, and emotion that goes into the phone calls you have to make.  Though you know it is a business, it also happens to be your life.

As you hang up filled with tears and check Facebook for a dose of reality, your son puts his hand on your shoulder.  The “reality” you hoped for was happy family photos or uplifting messages.  Instead, you read about Manhattan and your son reads over your shoulder.

You cry unsure as to why.  You cry for all you face.  You cry for all you hope.  You cry for all you know.  You cry as you pray about the change you hope to see in the world so that you can once again smile like you mean it.

To hope.  To change.  To dream.

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!

Righteous Anger

Every week, I read about about the journey of Kelsey and her family.  This week it is my turn.

I am Kelsey’s grandmother, and Saturday night I went to see a movie, American Assassin—a spy thriller at its core but also a story about the limits to which one is pushed as a result of anger over a loved one. 

After approximately 15 minutes into the movie I started to cry hysterically.  I connected to the movie’s main character in a way that caught me off guard.  It finally hit me that, just like the character in the movie, my actions for Kelsey’s Kaleidoscope have been motivated by a combination of love and anger: righteous anger.  The difference though, is that my feelings are not fiction.  They are reality.

When Kelsey was diagnosed with PAN, I felt a sense of helplessness that I had never experienced.  As a mother and grandmother, I usually know what to do to fix things for my family and make them right.  This time, I was unsure as to if or how I could possibly help or improve Kelsey’s situation.  But there was one thing I knew for sure:  I would not sit on the sidelines doing nothing as my granddaughter struggled daily with a debilitating disease.  Therefore, I took the initiative to start Kelsey’s Kaleidoscope in an effort to fix the problem by raising money and awareness so that kids like Kelsey, who are afflicted by PAN or other orphan diseases, no longer suffer. 

I had always known that I was motivated by unconditional love and an instinct to make things right and better for my children and theirs.  But I now understand that I have also been motivated by anger:  anger over the unfairness of it all, anger from watching my beloved granddaughter suffer, and anger from the vast unknown. 

It has been difficult.  Raising money and asking for donations to fight PAN is the most humiliating and humbling task I have ever performed.  Indeed, it is righteous anger that gives me the strength and the courage to do it. 

In just under two years we have had successful fundraisers, generous donors and many discussions with researchers, doctors and other families who struggle with the same issues.  The support and response have been overwhelming.

It is with my most sincere gratitude that I thank all who have supported Kelsey’s Kaleidoscope.  We could not do this without you, and we ask for your continued support as we channel our righteous anger to continue our efforts to find a cure.

A little affirmation…

Anyone who knows me well knows that I do not garden or have a green thumb.  I simply do not enjoy it.

But at certain points throughout the year, weeds take over my front yard and I cannot wait another day to get my hands dirty.

This was recently the scene on a 93 degree day.  I set up the slip and slide for the kids to enjoy and got to work.  About twenty minutes in, with sweat pouring down and the heat so stifling I was ready to stop, a guest asked to join me.  It was my girl.

Kelsey asked if she could assist.  She put on my gloves and was ready to go.  She was doing such a wonderful job.  As most tasks with six year olds, she tired after only a few minutes.  While I came to that point at 20, now she was watching.

She gave up on assisting physically, but she did offer much more than arm strength.  

She followed me every step of the way, encouraging me and cheering me on.

Phrases such as, “You’ve got this Mom,”  “Wow!  This is really looking great Mom,” or “You are really doing this girl” echoed from her sweet little voice.

I actually enjoyed the final minutes of the otherwise mundane and tedious task.  A little affirmation goes a long way no matter what it is you are doing.

Today, offer one to a child, a colleague, or a friend.  Pay it forward and make a tedious task a little less tedious.

You Got This!

First Grade terrain: kindness, courage, and curiosity.  Those three elements seem to be the keys to success.

New learning can be found at every turn and understanding is essential.

As I sat in Kelsey’s first grade chair and stared around the room at the other parents, I could not help but think – Kelsey, you got this.

For all that you have endured and all you dream to do – Kelsey, you got this.

Math facts may seem troubling and language may be puzzling, but Kelsey, you got this!

Restrictions may be come and go, but strength and hope will be there to assure that you have all you need – Kelsey, you got this.

As the other parents wondered about report cards and reading levels, I took the room in carefully – Kelsey, you got this.

It was full of energy, bright colors, and excitement if you ask me.  I smiled and I thought once more, Kelsey, you got this.

Stay strong, stay positive, and smile every day- Kelsey, you got this..

I am so proud of the curious young woman you grow into every day.  The one whose kindness, enthusiasm, and courage reminds me to strong – Kelsey, you got this.

First Grade terrain: kindness, courage, and curiosity – Kelsey, you got them.

Perhaps it extends beyond first grade classrooms.  Perhaps they are the keys to success for us all.

Today, I encourage you to be all three with respect and patience for all you encounter.