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.

Comedy for a Cure – THANK YOU

The music was flowing, the mood was positive, and the comedians were hilarious!  Thank you to ALL who came out to support our efforts.  Comedy for a Cure brought laughter and the generosity displayed helps us get one step closer to finding one.  The future is bright and hope was everywhere we looked on Friday night.  THANK YOU, THANK YOU, THANK YOU!

Our fifth-year will be bigger and better… Save the Date, 11/20/20!

Comedy for a Cure – FRIDAY!

Featuring a Comedy Line Up sure to keep you laughing!  Click here for tickets.

Andrew Lee     Brett Druck      Rob Ryan     Cory Jarvis

Join us on FRIDAY!  This Friday, November 22, 2019, we will host our fourth annual gala from 7:00 PM – 11:00 PM!

Tickets are $75.00 per person!

November 2019 Gala Tickets

Auletto Caterers

1849 Cooper Street

Almonesson, NJ 08096

Guests will enjoy an evening of cocktails, stations of food, music, door prizes, and auction items.

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!

Kindness at DuPont

Mary Wagner, author of Kelsey Hates the Needle, and a guest star from Paw Patrol joined patients at Nemours DuPont Hospital for Children last week.  Mary was able to read aloud, spread joy, and donate books.  The patients were grateful for the visit, but we were grateful for the chance to help other patients from DuPont Hospital as they have helped Kelsey so much through the years.  Days there are not always easy, but kindness and generosity can go a long way.  Thank you for making a difference Mary.

Grace Today

Routine lab work, it seemed.  We scheduled our time as usual and showed up with our appointment to avoid lines or waits for Kelsey.  On average, Kelsey has to draw between  6-21 vials.  Though that sounds alarming (and sometimes looks equally as alarming), we are as used to this procedure as possible at this time.

Kels likes to talk as she awaits the needlepoint.  She typically handles herself so maturely that she does not even require a handhold.  Sometimes, she likes to do so just for added security.  This weekend, she said, “I’ve got this.” 

The technician was surprised by Kelsey’s wit and conversation and we sign the papers and verify the information.  She was also delighted with Kelsey’s mature conversation and positive attitude upon sitting in the chair.  “How old are you?” she asked repeatedly with the joyful young woman who sat before her in the chair.

Suddenly, Kelsey’s face changed as the needle went into her arm.  Nothing was coming out… she said softly yet firmly, “It hurts so much,” as a tear ran down her cheek.

The technician called for assistance and looked nervous.  We all tried to stay calm.  I shot a look of concern to the technician as Kelsey grabbed a hold of me tightly.  Something routine turned into a scare in a matter of seconds.

Within a few minutes, it was over.  The vein was properly identified and the vials were full.  Inside, I was shaking and alarmed, but outwardly praised Kelsey and held her tightly.

Before we left, the technician stopped Kelsey to say, “Thank you for showing me such grace today.  Many adults would not have been able to do that.”

Brave has become a past time for Kelsey. 

When we got in the car, tears filled my adult eyes and Kelsey ripped off the band-aid to “forget about all of that.” #thisishowIbrave she said with her BRAVE headband on and a smile.

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

We challenge you!

#thisishowIbrave

Brave can be anything to anyone.  Getting out of bed, driving in a storm, prioritizing, receiving an injection, or enduring a hard day are a few examples recently heard about how one overcomes and braves through the day.

We are brave and so are you.

We nominate you to tell us how you brave!  

#THISISHOWIBRAVE CHALLENGE:

Nominate 3 people to support Kelsey and rare diseases everywhere.  Show us how you brave!  You have 3 options:

1. Tell us how you brave with #thisishowIbrave

2. Purchase Kelsey Hates the Needle

3. Donate $25 to Kelsey’s Kaleidoscope, Inc. @ www.NewViewforPAN.org

You have 48 hours!