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.




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