Family is truly the epicenter of this foundation. Without the love, support, and generosity of our families, we would not be the organization we are today.
The love we feel from our family also lifts us up. We have met new families on our family support group site and pray for the families around the world afflicted with PAN and dada2. It is not always easy to digest the reality of this disease and the daily strife it causes for families.
Last week, we tapped into social media with another feeling; hope. We know that we are not alone in the rare disease community and we try to lift each other up as a result. Sometimes, when things get dark, you need to find strength in those around you.
A dear family member has been struggling with her own battle and for her birthday this year, she wanted to do something special for Kelsey’s Kaleidoscope, Inc. Inspiration can come when you least expect it. Though she already reached her goal, I invite you to view her fundraiser and want to thank her for spreading awareness and raising funding for our fight.
Typically in the moments after giving my child a needle of life-saving medication, I dash upstairs both to run away from the nauseous feeling in the the pit of my stomach and to block out the shrieks of pain caused by my injection. I usually put on my jewelry for the day and take a moment to breathe. It’s our routine, and we all try our best to make it “ok.”
When Kelsey chose me to inject the medication, I did not think I could handle it. Though we were both trained, my husband started the process first and seemed so much more competent and strong than I thought I could be as he injected. I was the comfort and that role suited me fine.
Today’s injection was a particularly tough one. In truth, perhaps they all are, but I often run away instead of having a moment to reflect on it. As I sit to find strength in the joy of laughter now surrounding me, Kelsey comes over to me.
She sees my face and touches my cheeks with her hands. She says, “Mom don’t be sad that you hurt me. You did hurt me today, but I know you love me and that’s why. You just want me to feel better. Ok? It’s OK Mom.”
OK? Is it? The truth is, it is not really OK. It is not really OK because my child’s presence to offer me calm is the reverse of what should happen. Her gentle smile and sweet touch leave me with no choice but to smile back at her.
As any mother knows, when your child asks for you, there you are. Those are moments when inner strength and pure love take over without knowing how you do it. You just do it. You find a way to be ok.
Mothers, I want to thank you for all that you do. I would like to thank my mother especially because there are many things she “just does” now and those that she always has. During times when I am not sure how I have made it through a rough day, week month, or year, I sit back and think, I did it because I am her daughter.
I hope someday, when a cure is found and my daughter is thriving, she will look back and see a reflection of all of her strength, all of her courage, and all that she has done in her life to help me be OK.
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4/5/18 – St. Charles Borromeo Church Hall – 7:00 PM
Toothpaste suspicions were accurate. Something inside was brewing. My son and I knew it through out unspoken bond.
The irony is that we had a well visit scheduled for that evening. I was happy to have a set of professional eyes on Kelsey to assure all was well. All seemed well so my fears were squelched.
That was until 2:00 AM when a child awoke agonizing in pain. It was her ear. It went on until 6:00 AM when I could provide another dose of a medicine that I hoped would do the trick. My choice in the middle of the night did anything but the trick and the pain just grew at a steady pace.
In those moments, though an ear infection seems to have developed over night, the mind still drifts. The worry increases as do the screams of pain. You hope the morning will bring her relief. You hope your family will have a sense of relief, too.
It was only an ear infection, thankfully. Four days later, the pain finally dissipated. A few days of medication left, you hope that will be the end.
When rain turns to snow and your husband leaves an hour earlier than usual for work, the day starts off interestingly.
The dog wants no parts of a walk nor do you have an umbrella handy. You want to make the best of the morning.
You sing a few of your favorite songs with your kids over breakfast and you talk about what fun awaits them today.
You worry about a cough Kelsey has developed. You do not like the way her eyes look. You don’t want to say aloud the worry you have every day, but feel acutely today.
You all head upstairs to brush your teeth when fighting ensues in the bathroom. They are concerned about toothpaste. They are mad about the duration of each other’s brushing.
When you question your son about the rationale for being upset, he says it is because Kelsey is not brushing her teeth long enough. I always tell the kids how important dental health is to overall health, and we have been working very hard to help Kelsey care for her teeth independently.
Perhaps it is more than that, though, and perhaps that acute worry of yours is coming off in a way you cannot realize.
You hug your son and thank him for his concern. You hug your daughter and pray the day goes well.
You hope the weight of the worry will not stick like the snow causing uncertain travels on the roads ahead.
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.
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.
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.
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.
“Smoking is bad. There is no question about that, Mom.”
“Absolutely,” I thankfully stated.
“Mom, I’m so disappointed by the people I see smoking. Don’t they know how bad it is?” she replied.
“Well that’s a complicated question, Kels. Not everyone knew the risks and concerns when they started. Many would like to quit but have a tough time with it,” I respond with far too much detail.
“Oh, ok. What would happen if you smoked with a baby in your belly?” she fired back with quickly.
“Well smoking could hurt a baby and cause problems,” I answered.
She sat in the back seat pouting. I wondered if she and a friend were discussing this and exactly what would come out of her mind next.
“Oh. I see,” she finally stated.
“Everything ok Kels?” I wondered.
“Yes. It’s fine, mom. I didn’t know that you smoked while you were pregnant with me, but I guess it explains the bad stuff inside of me. It’s ok,” she forgave me.
“Kelsey, Mommy did not smoke with you inside of her belly,” I reply and you know the tears stream behind my sunglasses because I knew that the next question was about to be asked.
“So what made the bad things happen inside of my body?” she asked.
When words of wisdom fall short, and life is harder to explain than seems reasonable… you try your best.
“Kelsey, it is a bit complicated. Something inside of your body is missing, but Kelsey’s Kaleidoscope, Inc. and the dada2 foundation are working to find a way to replace it,” I said full of anger, sadness, and hope intertwined.
“Of course, Mom. That’s fine. I forgive you,” said my sweetheart.
A few minutes later, she continued with one final thought.
“The sooner you can get that replacement for me, the better. OK?”