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.  


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…


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

Parental Pride

Last year, Kelsey watched her brother play a sport she had never tried. A kind friend gave her a lacrosse stick to start her off to see if she wanted to play. Occasionally this summer, Kelsey and her brother would have a catch. He showed her the basics though the sport is much different for girls and boys in most ways.

Tryouts came around this Spring for a very talented and skilled team. With little practice under her belt, she gave it her all. She left and entered the car feeling proud of herself for trying something new but felt that she “lacked the skills” needed to make the team. She was happy to play on any team and felt that she would really enjoy the sport after just the tryout.

To her delight, she learned that she was selected for the team and she was beaming with pride. Win or lose, making the team or not, we are so proud of our kids for trying new things and helping each other grow into the best versions of themselves possible.

Kelsey often doubts herself and her talents. When the email invitation came, it was a moment to shine.

May you shine brightly today. Our parental pride is shining tonight.

January 22, 2022 – Wings Night

Join us on January 22, 2022 for a Philadelphia Wings home game to support Kelsey’s Kaleidescope, Inc.  Tickets are $30 per ticket.  We look forward to seeing you there.

The halftime show will feature our 2027 Shamrocks Lacrosse players and any other friend local lacrosse players.

Tickets can be purchsed through:

Venmo – @NewViewforPAN

Number of Tickets

Wings – 1.22.22

Join us on January 22, 2022 for a home Philadelphia Wings game to support Kelsey’s Kaleidescope, Inc.  Tickets are $30 per ticket.  We look forward to seeing you there.

The halftime show will feature our 2027 Shamrocks Lacrosse players and any other friend local lacrosse players.

Tickets can be purchsed through:

Venmo – @NewViewforPAN

Number of Tickets

Wings Night – 1/22/22

This January 22, 2022, we will enjoy a Wings game and support Kelsey’s Kaleidescope, Inc.  Tickets will be $30 per ticket.  We look forward to seeing you there.


The halftime show will feature our 2027 Shamrocks Lacrosse players and any other friend local lacrosse players.

Venmo – @NewViewforPAN

Number of Tickets