Practice Injection Exam

“Tomorrow, I have a major test,” Kelsey said worried before bed.
“What is your test on?” I ponder in our world of virtual learning…
“Injecting a needle properly.  Don’t worry, it’s on a dummy, code word doll (said with a wink).  It’s practice for when I am a doctor someday.  I have to start learning now,” replied Kelsey with full sincerity.
She typed a list of all the necessary steps and practiced each step on me to ensure accuracy.  I gave her an A+.
Our talk continued with life goals and the innocence of youth, a turn occurred.  “Should I be scared of COVID?  If I became a doctor and the emergency comes back, how will I help patients and worry about me?”
When the day to day “normal” has become routine, moments bring you back…
Be Brave.  Stay Strong!

Kindness for a Cure

Random Acts of Kindness followed a week dedicated to spreading cheer and joy at Kelsey’s School.  Then we were humbled with gratitude and our community’s support for Kindness for a Cure.  Kelsey lives in a community where she and another student suffer from a rare disease.  This year, one dedicated secretary (with the support of all around her) committed to supporting our local non-profit organizations for a school-wide fundraiser.  Wow.  The letter that went home is below:

One School’s Kindness for a Cure

February 10, 2020

Dear Parents/Guardians,

In coordination with the Great Kindness Challenge,  students, staff, and families raise funds for special causes each year. This year, our school will raise funds and awareness for two rare conditions that affect two very special students in our district. We will donate all the funds collected to the Shwachman Diamond Syndrome Foundation and Kelsey’s Kaleidoscope, Inc. Each organization will receive 50% of the funds.

To learn more, click on the links below:

Kelsey’s Kaleidoscope, Inc.

Shwachman Diamond Syndrome Foundation

Many of you may not be aware of these conditions and how they impact two local families, so we wanted to bring more awareness and attention to the rare conditions affecting Kelsey, a third-grade student, and Maggie, a fourth-grade student in our district.

We ask that families who want to donate coins, have their child bring them in a disposable container or baggie. Anyone who wants to donate via check, can do so by sending in a check written to either organization listed above. Donations can also be made online using the links above.

Our School is proud of the awareness we bring to our families and hope this fundraising effort can assist in bringing more attention and a possible cure to Kelsey, Maggie and all of those affected by these illnesses.

Thank you!  (All!)

We are blessed and grateful for this initiative of kindness.

 

#BraveSquad

The stress that a rare disease places on a family daily is sometimes hard to truly describe.  The quest for normalcy can sometimes drain us.  However, sometimes it brings us together in ways we never anticipated.

Kelsey’s brother has started a movement.  Since the start of the 2019-2020 school year, he has quietly supported his sister by wearing a BRAVE band.  It is a small movement, but one he leads daily with his BRAVE band.

When it was time to join a school club to support business ownership and the process of how to run a business, her brother and his buddies got to work.

Together, they designed unique items and together the #BraveSquad sold their items.  Proceeds of all purchases were donated to our organization.  We are beyond grateful.

Kelsey’s brother has looked forward to this night since September and he proudly sold 115 BRAVE bands with all proceeds going to Kelsey’s Kaleidoscope, Inc.  He does not always understand the rare journey we walk along together, but he has realized the importance of it in our lives.  He quietly supports his sister daily.  We are beyond proud.

#BraveSquad

#RareAsOne

Mark Zuckerberg, Facebook Founder, and his wife, Dr. Priscilla Chan, committed to the challenge, “Can we cure all diseases in our children’s lifetime?”  Daunting.  Amazing.  Fantastic idea!  Can they do it?  Here is to #hope…

On Monday, the couple announced one step in the right direction to conquer the challenge set forth in 2016.  They will offer grants to 30 recipients to advance research, training, and awareness.  Of the 30 selected, the dada2 foundation is one of the recipients to benefit from this large grant along with other resources over a two-year time period.

Wow.  We only hope our small community of dada2 patients grows and the resources lead to a cure for our girl and the many others we know with dada2.  Here is to hope and generosity in 2020…

#RareAsOne

Nine Lessons in Nine Years

Kelsey soon celebrates nine years of life.  Each of her nine years has been unique.  She has endured so many inquiries, tests, and circumstances, many of them we as adults may not have experienced.  To put it another way, it has been a journey.   Each year of the journey has taught us something new.  We are grateful for each year and the lessons we learned.

Year One taught us resilience.  We spent 16 days hospitalized and torn apart as a family, each in pain with worry, concern, and lacking a diagnosis.  By the first birthday celebration, we bounced back ready to learn more and find an answer.  Each one of us was forever changed by the experiences that we can never fully explain.

Year Two taught us to advocate.  In year one, we listened to poor medical advice and waited on others to seek solutions.  Year one was painful.  Year Two was the year of advocating.  Remember to be your own advocate and advocate for your children’s needs, always.  No one will ever care as much as you.  We did not accept, “she is fine!” and we sought answers instead of waiting for them to come to us.

Year Three taught us to listen.  Year Three gave us a diagnosis.  We thought that would make life easier, but instead, it led us to more questions and further complexities.  Medication battles with insurance and a true inability to process how little we knew made us listen more and savor small moments.  Upon one biopsy that resulted in a huge incision on the neckline, the surgeon soothed a mother’s worry about the scar to say, “We have to make sure she sees her next birthday.  This scar will help us figure out how to get her there.”  Listen.  Trust.  Breathe.  That was Year Three.

Year Four taught us promise.  There was so much promise in the medication we were using and so much happiness and joy brought back to our life when the medication started to work for our child.  A child who was once lifeless and listless was running and climbing stairs.  Promise and joy were restored in many of Year Four’s moments.

Year Five taught us Vulnerability.  We began this journey with Kelsey’s Kaleidoscope and we started to tell our story.  We put ourselves out there and started to spread awareness and raise money for our foundation.  We connected with others who shared our story.  We were weak when Kelsey took a tough turn and faced the return of frequent hospital visits and scans.  We had a fridge full of medication that no longer eased pain or brought joy.  We were vulnerable and scared.

Year Six taught us patience.  We trusted and prayed and after eight months of changes, a calm came for Kelsey.  She was walking, running, and smiling with ease.  We were patient and we were grateful.

Year Seven taught us endurance.  The road had been long and pain Kelsey started to feel emotionally and physically transferred to each member of her family in some way.  We laughed, we cried, and we got each other through.  It was not without a long road and another failed medication.  Spots, weakness, and pain returned to bruise emotions and bodies.

Year Eight taught us hope.  We were beyond touched by the community efforts and new faces that learned of our journey and cared.  We published a book, we went on television, and we reflected on where we are at this time.  We have hope and gratitude.

Year Nine is unknown and undefied.  Together, we are ready to persevere and lift each other.  We plan ahead and dream big.  We thank you for your support and kindness.  We wish Kelsey a happy ninth birthday and pray for all of her wishes to come true.

NEW Brave Bands

Kelsey’s brother started a mission in the fall.  He wanted to join the school Entrepreneur club and sell his trademark Brave Bands.  He wanted to donate all proceeds to Kelsey’s Kaleidoscope, Inc.

This small dream has already led to the design and purchase of almost 1,000 Brave Bands.

If interested in supporting a brother’s desire to find purpose and meaning in his family’s journey to raise awareness and fund research for his sister’s rare disease, please let us know.  Brave Bands will be available for sale at the Market on 2/10.  Presale designs will be available on 1/25/20.

New colors feature local colors and are featured below:

9 months to 9 years

At nine months old, we were escorted back to an isolated hospital room following a scan that utilized sedation to find Kelsey in the arms of a new doctor wearing her yellow hazmat-style shielding.  She rocked Kelsey in her arms and an immediate connection was made.

This doctor was one who would work with us for the next (almost) decade.  She became a role model to Kelsey, a comfort source when in pain, and a trusted ear for her parents.  Words cannot express the gratitude a family feels when in the care of a trusted doctor for the child and the family.

Last week, the call we have anticipated arrived.

As Kelsey approaches her ninth birthday, this incredible doctor moves on in her career.  She will no longer provide care to Kelsey.

Nine years have taught our family that having an advocate who will call you on the weekend, meet you late in the ER and arrange a 10:00 PM biopsy, and HEAR you are a true gift.  Our family was blessed for nine years with such care.

Tonight, we met our new provider as Kelsey begins a few subtle signs of worry and concern.  We are hopeful for a continued level of care from this doctor.  In his own words, “I can see I have big shoes to fill.”  Though in reality, the shoe size was small, the sentiment rings true.

A New View – 2019 Year in Review

A Year in Review -2019

Kelsey Hates the Needle was published and is now available on Amazon and Barnes & Noble.  Book signings were held in Chicago, IL, and Deptford, NJ this summer to launch the book.

Breakfast with the Boss featured author Mary Wagner and illustrator Krystal Almora two times this year.
#ThisisHowIbrave started with Kelsey’s design of Brave Bands and her brother’s commitment to wearing a band daily to show his support.

Brave Day

This November, Kelsey’s school held a Brave Day in her honor.  Please click here to read the newspaper article regarding.

Thank you for your continued support and an incredible 2019.  We wish you a happy and healthy New Year!
 

Z3XCTANTL5AHFCR2AOLUV5CNWY.jpeg

Kelsey’s Kaleidoscope, Inc.
www.NewViewforPAN.org
@kelseys_kaleidoscope

Kelsey’s Fight Song

Easter 2014 went from an Egg Hunt to the hospital.  Kelsey and her mom drove to admit Kelsey because she could not walk.  As Kelsey slept off some pain, her mom cried for the unknown.  Then, a new artist shared her new song.  @RachelPlatten shared the story of her fight and Kelsey’s mom went from sadness to hope.   A powerful song can do just that…

A 2019 Thanksgiving family talent show had many displays of talent.  Kelsey selected Fight Song and the words speak volumes.  Though her voice was faint due to respiratory struggles and croup in the preceding days, the message is clear.

The Universal Language of Princess

Thanksgiving followed our gala this year for the first time in four years. Traditionally, Thanksgiving is spent preparing for and readying our minds for the gala.

This year, Thanksgiving was spent with reflection and warmth. We traveled a distance to be with relatives and newcomers. It was a day where all were welcome.  We had a newborn, an old-timer, and a refugee Kindergarten child.

This child struck a particular chord with our family.  Kelsey prepped for weeks with items she wanted to give this young woman.  However, no amount of preparation could prepare us for the reaction she had to Kelsey’s generosity.

A language barrier existed until Elsa came out of the bag. A crown was placed and the twirling began.  Princess, we found, is a universal language.

Each bow, dress, clip, and doll were met with a smile. The child was beaming with happiness and the mother’s emotion was hard to contain.

‘Tis the season of giving and sharing, whether it is time, money, or gratitude.  Kelsey saw clearly how to satisfy another’s need.  We are grateful for the lessons she teaches us daily.

Some lessons come when least expected.