Experimenting is a new favorite past-time for Kelsey. She is either baking with chocolate, making slime, mixing pantry products, or combining kitchen ingredients for a variety of fun and curious reasons.
A recent day of baking and cooking led to some interesting conclusions from our persnickety girl.
Today’s ice cream sandwiches smelled delicious until they were ready to taste. The amount of salt was difficult to stomach, and we realized our error with the butter after a review of ingredients.
Dinner was the opposite. The taste seemed to be missing something. It was, most obvious to our connoisseur, salt.
Later that night, she equated our salt disparity today to her medication recently. “I guess I’m like a recipe the doctors are trying to figure out,” she pondered.
And continued, “some think they have the right medicine and doses, but it is missing something. I hope they figure out the salt for me soon.”
As do we.
To support our salt intake and enjoy a fun event, consider attending our inaugural golf outing:
Wednesday Addams… a classic television character was the recent choice of a party we were invited to with an Addams Family Theme.
Wednesday, “the dreaded day” seemed fitting in many ways for Kelsey. The mention of the weekday sends a jolt of fear and frustration to Kelsey each week. We were surprised that she decided to dress the part, but being Wednesday “the worst day of the week” on Saturday made her smile.
Kelsey said that this was the first and probably last Wednesday she would enjoy talking about.
Wednesday on Wednesday does not have the same sentiment, but at least she found a way to smile for Wednesday (on Saturday).
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!
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.
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:
My mom wants health for her family and friends. Maybe you could take away Mr. Needle, too?
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.