#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

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.

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.

B is for BRAVE

Brave has taken on a meaning that we will not ever be able to fully describe.  Over 600 headbands with BRAVE have been distributed in our community.

Over 600 headbands were designed by Kelsey, crafted by hand, and selected by Kelsey’s peers.  On Friday, it will be BRAVE day at Kelsey’s school.

We are overwhelmed by this simple yet powerful act of one teacher’s desire to help spread a message of hope and love.

The support, generosity, and kindness our family has felt during the past few months as a result of this headband is B for BEYOND compare.

Limited edition black bands with silver BRAVE are on order…

Thank you to ALL who have purchased a band, worn a band, or showed Kelsey support.

The season of giving is upon us, but the spirit of support and love are all around.

BE BRAVE #thisishowIbrave

Comedy for a Cure

Join us on November 22, 2019 from 7:00 PM – 11:00 PM for our fourth annual Gala!  This year, we will feature a comedy show, featuring a Comedy Line Up sure to keep you laughing!    The show will include comedians: Andrew LeeBrett DruckRob Ryan, and Cory Jarvis

Tickets are $75.00 per person and available here .

This year’s event will be held at Auletto Caterers: 1849 Cooper Street Almonesson, NJ 08096.  Guests will enjoy an evening of cocktails, stations of food, music, door prizes, silent auction, and Chinese auction items.

Email newviewforpan@gmail.com for more information or to donate a basket!

We hope to see you there!

Guess My Trait

Guess My Trait- write a paragraph about a character’s thoughts, words, and actions that convey the trait you have been given.  Can you guess the trait that Kelsey’s brother described?

He wrote:

Kelsey has to push through things that none of us go through every day.  She is constantly monitored and checked by doctors and is daring.  Daily medications and injections are required to keep her healthy.  When her body flares, she gets or had rashes and spots and requires biopsies and lab work to determine treatment.  Even though she faces these challenges, day and night, she wakes up with a smile and doesn’t let her disease stop her.  This is why Kelsey does what she does.

BRAVE

#thisishowIbrave

Choose your Words Wisely

Mondays can be busy.  Even if we only have a few minutes between activities, we like to reflect on our day together.  The talk over our wardrobe change did catch us off guard this week…

“Today my feelings were hurt at school,” Kelsey said.

She elaborated, “this girl told me that her mom said I look silly out on the field.”  Then the same girl told me, “I wish you were not on my team.  You don’t deserve to be on it.”

HALT.  Deep breathes… Decisions, decisions…

The pause allowed for another moment we were not expecting.  Kelsey said, “Please do not get mad or tell her parents.  I told her that was really mean and it hurt my feelings.  Then I moved on.  I was with a few other friends and they all told her it was a mean thing to say.  It was really mean and really hurt my feelings, though.”

It hurt ours, too…

Later in the night, she further reflected to say, “it’s like we said when I had spots all over my body.  I remember when the kids in my class asked if I had chickenpox and they asked if it hurt.  I learned how to ignore it in my brain and say it is ok.  I never liked when people asked me about it, but I stayed brave.  I got this.”

Watch what you say, children are listening…

We discussed that we cannot change the way other people act or the words they choose, but we can choose our own.  Choose wisely.

Please spread kindness, respect, and love wherever you go today…