A New View in Review – 2017

Kelsey’s Kaleidoscope, Inc,: A New View for PAN

This year, we celebrate your generosity and appreciate your willingness to learn more about the rare disease we aim to cure. We hope to continue our efforts in 2018 to raise money in support of research efforts on an international scale.

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Rosemary Connors NBC10@Issue

Kelsey’s Kaleidoscope, Inc.: A New View for PAN was featured on NBC10@Issue with Rosemary Connors to raise awareness and share information about the disease we aim to cure and our fundraising efforts to date.

Second Annual Gala

Dr. Chip Chambers explained the terror or the rare disease dada2, which manifests as PAN for Kelsey, at our Second Annual Gala this November. Dr. Chambers is the former Chief of Endocrine Surgery at Vanderbilt University Medical Center in Nashville, Tennessee. He continues to hold his clinical faculty appointment at Vanderbilt, and he operates and teaches residents at the Veterans Affairs Medical Center. Dr. Chambers’ two children were diagnosed with DADA2 in March 2014, just one month after the first articles describing the disease were published in the New England Journal of Medicine. He has spent the last two years making connections among clinicians treating patients with DADA2 all over the world, as well as patients, their families, and researchers studying the enzyme.

During his informative and descriptive speech, he asked the question of all in attendace: “How would you feel if your five year old was having strokes and the doctors cannot tell you why or tell you what to expect next?”

Having lived through that pain, I can tell you the answer. The answer is fear of the unknown, fear of what you will wake up to every morning, and fear that you are not and have not done enough as a parent.

For those of you who attended our Gala, thank you. No parent wants to live in fear or to feel helpless for their child. Your support, generosity, and love helps spread feelings of hopeful over helpless.

We surpassed our efforts from last year and raised just over $25,000 that evening. We will continue to advocate and research in 2018.

Dr. Kate Rubins

Kelsey was able to meet Dr. Kate Rubins, the first astronaut to sequence DNA in space this April. Kelsey was given an opportunity to speak with Kate and ask her questions one-on-one as a dada2 patient through the NIH.

Dr. Rubins was poised, patient, wise, and a true role model. I would have hand picked Dr. Rubins for my children to meet. She, however, picked us.

Catching for a Cure

The Britto Agency organized a softball tournament on behalf of Kelsey’s Kaleidoscope, Inc.: A New View for PAN this September.

Twelve teams gathered at Pennypack Park on the Delaware to show off their softball skills and get the tournament win.

The Britto Agency helped us raise over $9000 during the Catching for a Cure event. 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!

St. Paddy’s Day

On March 17, 2017 we hosted a St. Paddy’s Day Happy Hour to fundraise for our cause. Our collective efforts raised $4,000 on St. Paddy’s Day. Sláinte!

What is DADA2?

To read more about the gene deficiency that manifests as PAN for Kelsey, please click on the link below to learn more.

http://www.dada2.org/learn

Hope & the Rookie Rockette

There is something fantastic about being in NYC during the holiday season. It is a feeling you get coupled with a sheer sense of adventure and excitement that seems electic.

Walking through the city and Rockefeller Center with my family would have been special in and of itself. However, we connected with The Garden of Hope. They read aboutKelsey and her disease, and they offered us an extra special treat following our show.

The curtain barely closed as an usher arrived at our row to gather Kelsey, her brother, and her cousin. She led us straight backstage through the hustle and bustle of the crowd. Awaiting our arrival were two Rockettes. One was a veteran in her seventeenth year and one was a rookie. Both were beautiful, kind, and genuine. While they dazzled us on stage during the show, they certainly made Kelsey feel like a star.

Their grace, patience, and kindness warmed my heart.

Thank you to The Garden of Hope for spreading kindess and helping my little girl feel special.

Enjoy a video summation of Kelsey’s experience below.

Lost in Loss

I must admit, I was feeling proud and full of holiday spirit when I came home from my son’s wrestling match. I was so proud of his efforts and his determination. I sat down with a cup of coffee and a smile. I beamed with pride as I thought about how my typically stoic and serious son confidentally taught two Rockettes the backpack dance.

Feeling truly proud of my son made the news I read on the dada2 support group even harder to read. I cannot honestly say what made me click on it at that moment. Needless to say, my mood shfted immediately and the tears still stream as I think through what I read in disbelief.

With a very heavy heart, I read that one of the young men who suffered from dada2 was cripled in pain to the point where his body required a bone marrow transplant.

As we prepared and planned for our second annual gala, this young man prepared for the fight of his life. His November transplant felt hopeful. However, his body did not make it through the risks and complications of such a procedure. He passed away less than a month after his transplant and less then a week before Christmas.

The warmth of December and hope I have felt for an entire month were shattered when I read the news his family shared along with their frustration, confusion, and pain.

For this family and all those who suffer from PAN and dada2, this day is the one we cannot sit around and watch quietly. This day is the reason we write, we raise awareness, and we fundraise as fiercly as we can. This young man’s battle will not be forgotten nor will his family’s grief.

This one is for you Trevor. May your family find peace in the New Year as I am sure they feel void of all emotion as this year comes to a close.

Tonight, Kelsey cried herself to sleep in fear of Mr. Needle and her Wendesday Woe. As I consoled my child and prayed for answers, I also felt a mixture of gratitude and anger for all that I know and all that I cannot understand.

Balance

It can be difficult to slow down during the hustle and bustle of the holiday season. However, I find that is what we need right now more than ever.

We try to mix in holiday fun, quiet reflection, and a sense of gratitude for all that we do have in our lives every chance we have to do so.

At times the balancing act of work, play, and family can be a challenge for us all.

I think back to this week six years ago when I held a febrile child void of energy in my arms. She was nine months old and she was in need of serious medical attention. Docs convinved me it was teething. I was easily persuaded because I wanted to be. I wanted balance and I wanted to believe.

Standing in the doctor’s office demanding more, demanding testing, demanding results was not easy. It took bravery and perserverance.

The sixteen days we endured in the hospital following that moment were even harder.

Finding courage, finding strength, and finding balance in all things has taken effort then and now.

Kelsey’s disease helps us evaluate priorities, give thanks for blessings, and pray for balance in all facets of life. We pray for answers and we pray that we connect families and help others so that balance can be found.

I hope this holiday season helps you find comfort, balance, and love.

Dear Santa

While going about our bedtime routine, Kelsey asked me what was on my Christmas list.

I chuckled and said that the health of my family and friends were the only things I would write on mine. That is the truth.

She giggled and said, “Is that more important than hot new toys?” Then she thought about it for a minute and said, “I guess it is. Is it ok for kids to want the hot new toys, though?” as if she was speaking a ToysRUs commercial!

“Of course it is. Adults want children to have the hot new toys that make them smile,” I replied.

After another few mintues and a conversation change, she brought me paper and a pen. On it, she wrote:

Dear Santa,

My mom wants health for her family and friends. Maybe you could take away Mr. Needle, too?

Love,

Kelsey

She said all I needed to say. Santa, now you officially know my Christmas wish.

Helpless to Hopeful

Sometimes I sit and stare at Kelsey in amazement. I am continuously amazed by her beauty, her wisdom, and her poise. More often than not, it is because aside from being truly dazzled by the fact that she is my daughter, I am in amazement that she could possibly have this hidden condition that so few people can truly understand.

Dr. Chip Chambers helped explained the terror or the rare disease dada2, which manifests as PAN for Kelsey, at our Second Annual Gala. I will share his speech in the near future, but one of the sentiments he shared has particularly stuck with me.

How would you feel when your five year old is having strokes and the doctors cannot tell you why or tell you what to expect next?

Having lived through that pain while my daughter was three and living that question on a daily basis, I can tell you the answer. The answer is fear of the unknown, fear of what you will wake up to every morning, and fear that you are not and have not done enough as a parent.

For those of you who attended our Gala, thank you from the bottom of my heart. No parent wants to live in fear or to feel helpless for their child. Your support, generosity, and love helps my family feel more hopeful than helpless.

We doubled our efforts from last year and will continue to fundraise, speak out, and help anyone else who finds themselves affected by PAN and dada2.

Our Third Annual Gala will be even bigger and better. Save the date, November 23, 2018.

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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.