November 19th – Comedy for a Cure

Comedy for a Cure

Join us for a night of COMEDY and laughter.  Save the Date for November 19, 2021,  7:00 PM – 11:00 PM for our sixth annual Comedy for a Cure!  Featuring a Comedy Line Up sure to keep you laughing!

Comedy for a Cure



Venmo – @NewViewforPAN

PayPal

Ignore the Noise and Play On

Ignore the noise and play on…

Losing and winning are such important life skills. Teaching our children how to win and lose with pride and integrity is always important to our family. As sports return outside this fall, we realize how essential this lesson is post-quarantine.

Parents react sometimes more than our children, and our children are always watching.

Our son recently had the chance to volunteer as a referee to a younger league and while there to watch his first time as a ref, we heard a parent tell him, “The whistle is there to blow, ref.” This line was both a humbling and interesting parental moment.

We warned him ahead of time to stand strong and do his best. “If anyone chirps at me, I will ignore them and play on.”

As we continue to win and lose this year in personal and professional conquests, we celebrate many as well.

Ignore the noise and play on…

Sound advice from our strong and brave son.

*******************

Join us for a night of COMEDY and laughter.  Save the Date for November 19, 2021,  7:00 PM – 11:00 PM for our sixth annual Comedy for a Cure!  Featuring a Comedy Line Up sure to keep you laughing!

Venmo – @NewViewforPAN

PayPal

Ignore the Noise and Play On

Ignore the noise and play on…

Losing and winning are such important life skills. Teaching our children how to win and lose with pride and integrity is always important to our family. As sports return outside this fall, we realize how essential this lesson is post-quarantine.

Parents react sometimes more than our children, and our children are always watching.

Our son recently had the chance to volunteer as a referee to a younger league and while there to watch his first time as a ref, we heard a parent tell him, “The whistle is there to blow, ref.” This line was both a humbling and interesting parental moment.

We warned him ahead of time to stand strong and do his best. “If anyone chirps at me, I will ignore them and play on.”

As we continue to win and lose this year in personal and professional conquests, we celebrate many as well.

Ignore the noise and play on…

Sound advice from our strong and brave son.

*******************

Join us for a night of COMEDY and laughter.  Save the Date for November 19, 2021,  7:00 PM – 11:00 PM for our sixth annual Comedy for a Cure!  Featuring a Comedy Line Up sure to keep you laughing!

Venmo – @NewViewforPAN

PayPal

5th Grade Dreams

As the dawn of a new year approaches, Kelsey returns to her dream of becoming a doctor someday to help and heal others, just like her doctors do for her.

We hope you have a wonderful new year ahead, wherever you are.

Your life is like a Kaleidoscope

The food recommendation is something new. We settled on an order from a local restaurant we rarely order from in the area. Our expectations were low, but we were happy to try something new.

The cookie that ended the night was simply perfect.

We were all amazed at this good fortune. The vibrant, ever-changing life we see is one we are proud of. We approach the start of a new school year and another unknown surge of the pandemic with fear and gratitude.

We wish you well and the colorful light that shines from our kaleidoscope.

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.