3rd Annual Golf Outing

Monday, July 11, 2022

The Legacy Club at Woodcrest Country Club

300 East Evesham Road

Cherry Hill, New Jersey

Breakfast and registration start at 8:

8:00 AM – 9:00 AM Bagels, Coffee, and Warm Up on Driving Range

9:00 AM Shotgun Scramble 

Beer Cart Included

1:00 PM Lunch including 2 vouchers for beer or wine followed by prizes

$200 per golfer

RSVP – newviewforpan@gmail.com

Venmo @NewViewforPAN


3rd Annual Golf Outing



Thank you, Educators!

Education is an ever-changing profession that refreshes and resets each September. The pandemic stress and strain on educators have been evident. Through the uncertainty of remote learning, the choice to virtually instruct to protect our daughter’s health, and the return to traditional schooling this year, we remain proud and grateful to our educators. 

Our son started his journey in middle school this year, which was a new level of unknown. The administration, faculty, and all staff this year have gone above and beyond to make this transition an easy one for us, while the return to traditional schooling has not always been easy for teachers.

Our elementary school was familiar, but the choice to keep Kelsey home for her health last year was difficult. Like our son faced a transition this year, so did Kelsey. The return presented a few initial roadblocks, but Kelsey’s perseverance did not waver.

In truth, all students and families faced a transition this year. So did all teachers.

We hope that the educators in our lives know how appreciated they are and how grateful we are to have them in our children’s lives. They make a difference every day. From book clubs to character education, and everything in between, our educators make it happen. They create a positive atmosphere for our children, they challenge young minds, and they make an impact on the next generation. They are brought into our dinner discussions and become a part of our families for the year they instruct our students, but for many years to come as well. The lessons and skills they teach build and grow to cultivate the best version of our children. 

Thank you, teachers.  We have been lucky enough to have the most amazing teachers surround our children.

We see you and we appreciate you!

Wedding Bells

This weekend, Kelsey attended her first wedding. The stunning bride and her handsome groom are family, and the occasion was very special for each of us.

Filled with emotion and joy for the couple, we realized how long it has been for a family wedding overall.  

Perhaps it is because Kelsey resembles the bride or just because Kelsey was present, but for a few moments, a conversation returned to make the day even more emotional for our family.

When Kelsey was two years old and we were still unsure of her body’s pain, we had a specific biopsy planned. It was scheduled for an upper thigh lymph node.  However, when we met with the pediatric surgeon for our pre-surgical visit, he started reviewing her neck and talking to us about how he would try to use a natural fold in that area.

Young and afraid parents, we remember vividly asking a naive question about the scar and it’s constant reminder of Kelsey’s battle.  “What about her wedding day,” we questioned.

He turned to us and said one the most powerful responses of our lives.  It was a statement that changed our perspective overall.

“Keep in mind, our goal is to get her to see her wedding day.”

Our efforts remain strong and progress for her disease has been made.  When Kelsey has great days and weeks, it is easy to want to forget about that day.

We can never actually forget that line nor our commitment to that milestone and many more…

Routine Wishes

The simple and routine can be the things you wish for most with a rare disease. In fact, the routine and normalcy are often what you dream about when pain strikes fast.

Migraines, eye movement, eye strain, constant nausea, and no answers was a recent update we received from another  patient Kelsey’s age. She is currently experiencing daily episodes of pain and discomfort without relief or answers.

Today, as we look at Kelsey and her treatment plan, we continue to be grateful while it works for her. Talking to this family made the ever-changing nature of a rare disease deeply troubling.  We learn from each other and hope our doctors can safely manage all symptoms to give our children comfort and relief.

We count our blessings every day and hope that this family can soon look back on this difficult time.  Our family efforts to further fund research and awareness are always on our mind to help those we know who struggle.

Be brave. Be grateful.  

Motherhood

Being a mother is complicated. Motherhood is challenging and complex with no rule book or script. Sometimes, you follow your instinct and realize that it all worked out, but a redo would be preferred.

In the end, though cliche, mother knows best.

We celebrated the president of Kelsey’s Kaleidescope, Inc.’s birthday this week. She is a mother of two and grandmother to three. Reflecting on how to best celebrate the life of this great mother, we made toasts as a family.

Kelsey remarked that her grandmother had a wild side and a caring heart. Her wild side included doing anything for her family. She thanked her grandmother for making such a supportive and loving environment. Kelsey continued to express her gratitude regarding this organization and the tireless pursuit she bears to raise awareness and help us find a cure.

Kelsey’s brother also spoke. He thanked his grandmother for building this amazing life and creating his family. He continued to remark on her philanthropic efforts and praised her for beginning this organization, one he hopes to be president of one day.

Both children spoke about kindness and love in their own ways. Maybe motherhood is more natural than we think. Kids see the love and feel when they are protected. They know when you are genuine and when you express an interest in them.

We are lucky to be surrounded by love and support. The two young ones knew just want to say to celebrate the birthday of such a special mother.

We thank this mother for her endless love and support. She is brave, bold, and wild according to Kelsey…

Thirteen

We close our eyes and think back to 6:26 PM on the night you were born. A first in both families, and a beautiful baby boy. Your eyes lit up the room and though your birth was tough to endure for your mom, you have made every minute moving forward worth it. 

Strong – your strength is layered. You are physically capable and athletic, but your inner strength shines when faced with grief or the natural acceptance and understanding of your sister’s rare disease.

Vulnerable – Strength can make us vulnerable and so can our teenage years. You are beginning to find your way and your path. Every day, we watch you develop a little bit more into the man you will be come. We are proud of what we see.

Humorous – Seventh grade humor is not always enjoyed around the dinner table, but your laughter is contagious and we hear it often. Keep laughing!

Tentative – along with seventh grade and a teenage milestone comes many choices. Some you will choose and others you will avoid. At times, this tentative nature may hold you back, but your decisiveness when it matters shows your character.  Keep making smart choices.

Confident – polar opposite of tentative is seen often; confidence. You display confidence on your field of choice and in the classroom.  Keep standing up for yourself and what is right. 

Observant – since the moment you opened your eyes, you have scanned the room thoughtfully and carefully.  Keep watching.

Athletic – Your busy schedule is by your own design, but we are committed to you and proud of the many sports and activities you try.  Keep trying and keep learning.

Musical – With guidance, you started to play an instrument at the age of seven. Now by choice, you have found the one that gives you a voice.  Keep playing.

Philanthropic – Kelsey’s disease has not been easy on any of us, especially you.  Thirteen years later, you are part of the solution and aim to find new ways to give back or help your sister’s disease find hope.

Gamer – you love “relaxing” with your friends while gaming.  We may not understand the screams and words you use, but we love hearing you have fun.

Inquisitive – you question, you explore, and you design.  As the world keeps changing, these traits will guide you.  Keep searching until you find your path.

Brave – You helped our family find a word to shape our journey and brave efforts were led by you. Stay courageous and brave, The right path is sometimes easier without courage, but it will not always be worthwhile or meaningful.

Make every moment count and don’t blink. We love you. Happy birthday!  

Rare and Beautiful

Rare is an adjective defined as unusually great or excellent. Rare can also mean few and widely spread apart.

When rare is used to describe a disease, it scares you. You lie awake thinking about it. You constantly worry and you want to do everything you can to foster uniqueness in a way that does not define you as few and widely spread apart, but one that makes you feel unusually great.

Any hospital visit or stay is a reminder of the rare you want to avoid.

But moments shine with hope and a glimmer of the unusually great and extraordinary, too.

This weekend, Kelsey was a shining example of beauty in its rarest form. Confidence and poise surrounded her as she chose to wear her soccer uniform to her special dance with her father to make the quick change required an easy one for her. She simply placed a tutu over the uniform and that was that.

What started out as a joke to save time ended up being her decision.

Rare is simply magnificent sometimes. We are also beyond grateful when a moment celebrates Kelsey’s rare and defines her in all of the right ways.

Be brave. Be rare. Shine on.

What Are You Doing for Others Today?

Life’s most persistent and urgent question is: “What are you doing for others?”

May be an image of 1 person and indoor
11 inches later…
May be an image of 1 person and indoor

Kelsey always aims to give back and do for others. She decided over a year ago to grow her hair and donate it to Locks of Love. Persistence. Effort. Bravery. Kelsey did it.

May be an image of 2 people, people standing and indoor

The Langmore Salon made this day special and memorable for Kelsey. Crystal was caring and made Kelsey feel so proud. Kelsey is our inspiration and makes us ask…

What are you doing for others today?

Kelsey, keep making us proud. We love you. We are proud of you.

#newviewforpan

@kelseys_kaleidoscope

#RareDiseaseDay2022

Imagine that all of a sudden, your world stops.

Your family’s focus becomes a single, life-threatening topic. Home becomes the only place that is safe or manageable. Your physician is on speed dial. Doctors’ offices are the only place you have been in a while.

You monitor symptoms, wondering if one will lead to more. You think, “This will pass soon,” but weeks, months, even years drag on. Your only hope for change is out of your control, resting with specialists. Questions linger.

Rare Disease Day is celebrated each year on February 28 to raise awareness and celebrate the many faces impacted by Rare Diseases.

Every day life with a rare disease can be challenging. A rare disease during the pandemic has been something new and different. As we hope our global pandemic comes to a close, remember that rare diseases surround us.

Our Kelsey is our reason and our rare. We love her and thank you for supporting her rare.

#RareDiseaseDay #BeBrave

Save the Date

Save the Date
July 11, 2022
Third Annual Golf Outing
Woodcrest Country Club