A New View for PAN
The artist in Kelsey cannot be contained. She loves to write and draw before she falls asleep, and I typically enjoy reading her words and seeing where her mind drifts before she falls asleep. I came across these and felt that her words and thoughts spoke volumes.
Seven years ago, a beautiful girl was born named Kelsey. She came into the world with grace and her umbilical cord wrapped around her neck. “We will consider it her first necklace,” laughed the doctor as her Apgar test showed health on all levels.
The course of her first 3.5 years is almost indescribable when we look back. We had constant signs and indicators of worry and trouble. We had surgeries, hospital visits, biopsies, rashes, and red marks. We had so much hope that “this would just go away,” though we knew in our hearts that 3.5 years of worry were not going to simply do so.
Almost 3.5 years to the day, on a June evening at 5:22PM, our world changed forever. Our 3.5 year old was diagnosed with Polyarteritis Nodosa and everything we knew has been more difficult since we left the hospital that night.
Understanding what a rare disease does to a person and her family is something you cannot understand without enduring it firsthand. It gives you perspective, it creates constant doubt, but it also helps you feel tremendous hope for what you learn and discover (depending on the day).
The second half of Kelsey’s 3.5 years have been equally trying. “At least we know what it is,” we sometimes say, because we now know what we are worrying about. Sometimes, that only makes it worse.
When Kelsey blows out her seven candles, we will be filled with hope and wonder. She is a child that lights up the world with grace, beauty, wisdom, and energy. Her love of life cannot and should not be contained. Keeping her body strong, filling her brain with more wisdom, modelling character virtues, and choosing love in the face of the rare illness we first learned about 3.5 years ago is the journey we travel every day.
Seven years and so much of a story to tell.
Happy birthday to a girl that has taught us so much and continues to sparkle and shine in so many ways.
I once saw a shirt that stated My Heart is on the Mat.
To any mother who has watched three periods of sweat, endurance, and passion in their wrestler’s eyes, you know exactly what that shirt means.
Win or lose, the young men and women shake hands, give it their all, and often times leave the mat with raw emotion on their faces. It is a mental battle and a sport that creates mental toughness.
Mental toughness can be difficult to achieve. Few activities create or work on mental toughness in 2018. Wrestling, however, is all about the heart and soul of small failures leading to great victories and tough losses that challenge the competitor to work harder. Stamina, sportsmanship, and pride are developed and fostered with every passing week.
Though my typically weekly thoughts express my worry and serve as attempt to gain clarity, share hope, educate, and raise awareness, today my gratitude is for a sport that helps my family focus and my son escape. It is the sport that gives my son an outlet for all that I know he cannot understand in this world and all that he questions about what he sees.
On the mat, it is him against the world. He stands there strong and tall, ready for battle.
It is a time for him to shine, focus, and I watch as he places his heart on the mat, minute after minute, period after period. Win or lose, there is always something gained.
To all the mothers who watch their sons on the mat, I support you, and I understand you.
My son does not always win, though I kiss him and tell him how proud of him I am each time he gets out there. I am so proud of his progress, his intensity, and his effort. The truth is that no matter what the score at the end of the match, he has gained a new skill, level of confidence, or insight on a skill or position to work on in the future. Each match helps him to grow and better himself as a person and as an athlete.
When you have a child with a rare illness, specialists are kind and curious. Pediatricians are cautious. Those who know hug a little tighter and they mean it.
When Kelsey was in isolation and quarantine, a yellow stethoscope was left behind as doctors had to utilize this specific tool each time they came in to check her and assess her progress. She took it home in December of 2011 from the isolated room as a “souvenir” of sorts.
I have considered getting rid of it as it reminds me of a difficult time in our journey and there are also days that I look at it more as a yellow badge of courage for my brave girl.
This weekend, she checked us all out with the souvenir and made us call her “Doc” while doing so. It was joyful.
She wore the tool with pride and assumed the role of a doctor with grace.
During my check up, she spoke about her future. As I remain hopeful, I also fear the future and the unknown. When your six year old tells you that one day soon, she will consider being a doctor, the future looks brighter.
You smile and ask her why.
She responds, “Well that way, one day I can help find a cure while I’m at work. Then, I’ll take some home and give a little bit of it to myself.”
While I pray and hope that we work to assure that a cure is found before her white coat ceremony is possible, the sentiment sure made me smile.
To dreamers and believers everywhere, I hope your future looks bright this morning.
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.
Please click on the link above to support us as you shop on Amazon!
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.
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.
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.
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!
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!
To read more about the gene deficiency that manifests as PAN for Kelsey, please click on the link below to learn more.
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.
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.
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.
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.
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.
