Rare is defined as “marked by unusual quality, merit, or appeal DISTINCTIVE” and trust us, the life of a rare disease can be described as distinctive.

The rare and beautiful wonders of the world capture a sense of peace and awe when viewed.

The face of a rare disease or a young woman working her way through childhood with a rare distinction is heartbreaking.

A relative recently stated this journey as the unimaginable.  That would accurately describe the acute pain and uncertainty of these inexplicable lesions and the new limp that Kelsey is just smart enough to conceal from anyone who does not know her well.

Rare is never a word we want to use for our child’s childhood nor our child’s health.  Yet, here we are stunted with emotion for the lack of understanding these lesions bring to some of the brightest minds in the world.

Rare is lonely, rare is an emotional drain, and rare feels distinctively raw right now.

Please support our efforts and help us raise funds and awareness at our third annual gala: TICKETS.

Poison Ivy

The marks and the mindset.

They just won’t go away.

We try to remain calm.  We try not to bring them up, yet monitor them closely.

When planning for parties and treats, Kelsey asked if anyone had an allergy.  We talked about allergies to food, animals, and other environmental triggers.

She kept going asking if everyone was allergic to poison ivy.  We kept the discussion alive with stories from mother and father through the years.

“Dad, I must take after you,” she said.

“Have you been near poison ivy lately?”

“I must have been since these marks do not seem to have any other answer.  They must be poison ivy, right?”

If only.  We biopsy to learn.  We pray that we do.

This week, we meet families from around the world with dada2 and PAN.  We search for answers and thank you for all of your support.

To continue supporting our efforts, please do not forget your tickets to our third annual gala: TICKETS.