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.
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.
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!
Luck of the Irish proudly shines on St. Patrick’s Day. It seems to have held much promise personally. The offer to sell my first home came in the late evening on March 17, my sister in law received her marriage proposal on March 17, and blessings seem aplenty on such a festive day.
It seemed like a perfect day to raise a glass and share a toast for my baby girl.
The day started off with happiness and many green accessories on the children. Kelsey was full of joy and laughter. She enjoyed a visit from a leprechaun at school, who even left a questionable green liquid in the potty! Her day continued with a book “switcheroo” from a friend’s desk, and she came home with a beautiful drawing and writing that stated, “I feel lucky when I have my friends and my family with me.”
Lucky with friends and family, indeed we are.
Our collective efforts over the past few weeks and the generosity of our friends and family helped us raise $4,000 on St. Paddy’s Day.
May the luck of the Irish be with you if you shared a sentiment, donation, or gathered with us Friday evening.
My family continues to be overwhelmed by the love and support of our friends and family.
As we walked to the car following the party, I must admit I was overcome with emotion. I said to my husband, “Doesn’t all of this leave you numb? It is hard to be in these moments and accept that this is our reality sometimes.”
“It isn’t real to you when you inject our child every morning? That’s when it is real for me.”
My Irish husband sure put it into perspective. We offer our sincere appreciation and thanks to those who know our reality and supported our cause.
Our village is growing, and we are extremely grateful that it is. Sláinte!
Warmth. When someone is so genuine and kind, sometimes it brings me to tears.
I had that experience tonight. A colleague that I have known for a few years, one who ALWAYS lends a kind word or a beaming smile, stopped by my office. She asked for my permission to give me a gift for Kelsey through her church ministry. She described the ministry, and I was touched. The sentiment was genuine and kind.
The next day, she delivered two prayer shawls. I did not even have time to process the gesture when she dropped the bag off to me, nor did I look closely at the contents. As I left for the day, I smiled as I read the tags, full of joy.
However, when I came home and shared the shawl with Kelsey, together we put them on and both burst into tears. We were truly overcome with a presence and a connection that words cannot explain. The adult size is a purple hue that matches our foundation’s logo exactly. I actually had chills when I gently removed it from the bag. The tiny-version is a lighter shade for Kelsey. They are simply beautiful.
Kelsey said that she had never felt so warm and just did “not know what to say over a gift like this.” Nor do I Kelsey…
These intricate shawls feel like a blessing and a warm hug when you surround your shoulders with them. Hopefully, Kels is watched a little more closely now with this draped in her room. She wants to wear hers every night and pray that her needles go away.
I will do the same.
To the ministry and the thoughtfulness of a wonderful woman, words enough do not say thank you. However, I will say them anyway, thank you!
Almost exactly one year ago, my mother convinced me that silence was not the answer. With the help and guidance of dear family members, Kelsey’s Kaleidoscope, Inc.:A New View for PAN was born.
Part of me feared the perception my family would receive after we revealed the rare disease in our home. Part of me feared that people would look at Kelsey differently because she has a rare disease. The funny thing is, if anything, people are more kind and generous than I ever could have dreamed.
Last week, the ten-year-old student who joined forces with his family collected $300 at his stand. He stood in a crowded room full of parents, families, and students who were there to understand the world of business: how to create a business model and successfully see it through. As I looked around the variety of business models and concepts, they were very similar in every single way.
Only one had a group of family members adorned in pink, a band of bubble-gum goodness. Selfless, sweet, and kind. Only one student that night showed the world that his family raised him to give back, expand his horizons, and fight for what he believes he has the power to change. He did not make a single penny for himself or his time, but he was beaming with pride from ear to ear.
That $300 is going towards a cause far greater he can likely imagine. We have had some exciting happenings over the past few weeks. Soon, we will embark on our mission to find the cure. Every single penny earned and piece of bubble gum sold will go towards finding that cure.
What started one year ago as a dream is turning into reality. If not for my mother supporting me and urging me to speak about the fight I was only living inside, we would not be on our way to finding a cure.
Today, the kindness, the generosity, and the selfless acts of others have helped us begin that mission. When a ten-year-old young man “gets” it, you can not help but get choked up inside.
Courage has the power to heal and change lives. A ten-year-old and his family showed me how much good there is in the world around us. Sometimes, we have to open our eyes a little bit wider to see it.
This evening, soon after injecting the second medication of the day, we will smile and walk around a local “market.” This market is a school project for future business entrepreneurs to reveal a business plan and “sell” a variety of products to reflect their business model. It is a fabulous learning experience. However, there is much more to this market for my family.
About a month ago, one of Kelsey’s teacher reached out to me regarding this event. She wanted to let me know that her ten-year-old son would be participating in this event and donating ALL of his proceeds to Kelsey’s Kaleidoscope, Inc. Maybe it is not the best business model, but it certainly a child who understands compassion, charity, and community.
Touched. Grateful. Overwhelmed by kindness.
The tumultuous nature of the past few months has also created a natural break in fundraising. However, my heart melts to know that a ten year old young man did not stop thinking. This incredibly generous ten-year-old boy has never even met Kelsey.
To Kelsey’s teacher for sharing Kelsey’s illness with her family and raising a young man who would think more of someone else than of himself, thank you. To a young entrepreneur who took it upon himself to bring a bit of sunshine into the sunshine of our lives, thank you. If you happen to stop by the event this evening and inquire about Kelsey’s Kaleidoscope, Inc, thank you. It is the support and the spirit-lift from those around us that keeps us strong even when we feel that we are hanging on by a thread.
The sleepless nights, the relationship stress, the avoidance of public settings and birthday parties due to the vast array of germs, and everything else good and bad that January has been comes to an end this morning as the sun rises to February.
This month looks hopeful and bright already.
Thank you, February and thank you to an amazing ten-year-old and his family for sharing the love…
Gratitude is often defined as being thankful. My family’s emotions have recently been on a full swing of highs and lows. Today, however, is all about thanks. What began as a seed idea has blossomed into a mission and a quest for awareness, treatment, and a cure for our beautiful Kelsey and all others affected.
Friday, we will gather to dance, laugh, hear a bit more about Kelsey’s disease from Kelsey’s favorite doctor, and count all of our blessings. One main blessing is the ability to type from behind my computer screen the words I often find difficult to say aloud. I thank you from the bottom of my heart for reading, sharing, and joining me on this ride to help find a better future for my baby girl.
Today is about thanks. Whether you shared Kelsey’s video (and if you think of it and have not, please do), said a kind word, purchased tickets for Friday, or donated any of the items for auction on Friday, Thank You! We have collected well over $10,000 worth of items to auction through both a raffle and a silent auction display. We have Flyers tickets, Sixers tickets, a Party Host package, limited edition Pandora basket & gift card, portrait & photo sessions, power washing, swim lessons, spirits, restaurant gift cards a-plenty, beauty products, and so much more. I have been overwhelmed this week with attempting to fit ALL of the generosity into a brochure you could actually read. There are just so many wonderful friends and family members around. My family and I are very grateful.
I am so excited to share all of the many bounties and treasures we have collected with you that I thought I would end with a photo sampling of the items we will have on Friday night. THANK YOU!
