Golfing for a Cause

In the midst of questions and concerns, we find hope in our generous family and friends.

Our inaugural golf outing is fast approaching.

If you are interested in attending, making a basket for raffle, or donating something for a basket, please let us know.

We are grateful for you.

Click on the link below for more information:

Golf Outing

Eight, Please be Great

In a few short days, we turn the page on another year and hope for a great year of eight.

Seven has been challenging, to say the very least.  Though we have been showered with love and support, questions remain unanswered, therapy options are still in conversation, and the unknown overwhelms us at times.

We look behind to another year of lesions, biopsy scars, and pain.

We look behind for joyful moments and laughter that have kept us whole.

We look today into the eyes of a child full of joy, uncertainty, and love for all she does.

We look ahead craving hope and answered prayers.

May eight be as great as she wishes…

May all of her dreams come true…

“Am I fat?”

Body image and confidence can be a struggle at any age.

Impeccable words and explicit attention to building confidence in our children is incredibly important.  We work hard to craft language that helps our children feel strong and healthy, along with encouraging exercise, activity, and healthy habits.

Tears of anguish brought the house down on this topic the other night.

“Am I fat?” was the question because a young man in Kelsey’s class said she was fat and she was deeply upset by his inquiry.

“Of all the challenges I have right now, I do not want fat to be one of them,” was her eloquent expression stunning us right there before bedtime.

Teaching our children kindness and love could never be more imperative in our world.  Helping our children understand to be kind and full of love when someone tells them otherwise is more difficult than we imagined as parents.

Steroids cause a moon face and a puffed look that an eight year old child cannot help but misunderstand.  His comment may have been with ill intent or perhaps it was simply innocent.  Either way, we want our children to love themselves for who they are and never let one feature define the young men and women they will be today or become in the future.

We call her strong and brave.  Of all the challenges she faces, those are the words we hope she sees when she looks in the mirror.

Evaporation

Energy, like all things, has a limit.

Mental toughness and maintaining our “normal” is always our desire.  This week, it seems that our energy levels are depleting and evaporating by the second.

A struggle to walk for a child and daily injections have taken their toll on our family.  We still await answers and we struggle with the wait immensely.

We fear the unknown and wish our fears could evaporate.

Meeting families from around the world recently with the same struggles as ours was both humbling and scary.

Their stories are the same, their symptoms echo Kelsey’s, but underneath the surface right now, something is happening inside of a tiny body that cannot tell us why.

Another medical challenge increased its force this week and our limits are being tested.

Our energy has evaporated.

We hold on to hope but fear it will evaporate, too.

Giving

Giving can be a challenge.  Giving of time, giving of money, and giving of energy takes a toll on us all at various points.

Giving Tuesday was yesterday and our efforts alone on this charitable day raised almost $7000 for our non-profit organization.

Perhaps this support (following our most successful gala to date) came at a perfect time as our patience and faith have been tested during the course of the past months in virtually every way.

Then we saw the smiling faces at the gala of those who cared enough to support our efforts.  On giving Tuesday, we surpassed our goal by 3353%.  Though it is not the million or so we need to support the research efforts necessary to move research and therapy options forward for dada2, every dollar counts.

Our first gala came at a time when Kelsey’s arms were full of inflammatory markers and inexplicable red nodules.  Our third gala came at a time when round, red lesions lingered even with intense treatment and therapies.  We are trying to remain strong and appreciate all of the many who supported us over the past few weeks with words and donations.

We ask you to mark your calendars for November 23, 2019 and hope that our fourth gala does not have us facing so much uncertainty.

Gratefully,

Kelsey & Kelsey’s Kaleidoscope, Inc.

Wrong

Tonight felt wrong.  We went to bed with a child who could not walk or get up from the couch.  We were unable to receive medication due to a holiday, we continue to wait for a prior authorization for another, our incredible doctor has fallen ill herself, and we are just plain tired.

We are tired of feeling wrong and tired of not knowing why.

We seek answers but find that our decisions can be wrong.

Our hope drives positivity, but it too has a breaking point.  Sometimes our hope overshadows the truth.  Sometimes the truth takes a hold of our hope.

A morning judgement call felt wrong.  Instead of fixing it immediately, it was an all day point of worry and concern.   If anything, we always trust our instincts and feel we do right by our child.

Today, we were tired and tonight we are afraid.  We were blinded by what we hoped we saw and scared of what no one can tell us.  We feel it is wrong that the biopsy results have still not been conveyed to us.

Our medical team supports us and we are incredibly grateful to them for that care.  We are grateful for our committed doctors and their evening responses to our concerns.  We just don’t feel they know enough to ease our fears.

That feels wrong.

We are not always sure what is wrong, but we certainly wish we could make it right either way.

Rare

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.

The Story Behind the Smile

The story behind the smile… the story behind the photo is one of a child with a rare disease on the first day of school who found excitement covered by fear.

In this photo, large red lesions covered the skin of an otherwise smiling face and joyful young woman.  A sweater on the 92 degree day was worn to mask the red posts along with high socks and a long dress strategically placed around the worst of them.   Her positive and calm demeanor were met with anxious feelings and fear about what the other children would say if they saw.

She told kids they were bug bites.  Then she was sick of that story so she said they were rug burns to others.  Overall, she was scared.  She told a story because she did not want to get into her disease with everyone (so she said).

The lies she had to tell others to feel confident on her first day of school were challenging to hear as a parent.

Consequently, the parents of a child with a rare disease felt anxious and were at a loss for words.  Their brave child embarked on a new year in a way they never experienced before.

Sometimes the smile a child is wearing is not reflective of the feelings they face inside.

The story behind this photo is one we will not forget, but one we are proud to share to remind us all to share a kind word to make someone’s day.  You never know what is going on behind the smile.

17 vials to Phanatic Fun

The routine response to 17 vials of blood taken to check, maintain, and sustain still makes a parent weak.

We leave the National Institute of Health Sciences feeling tired and breathing a few sighs of relief.  Two full days of testing, talking, and questions is tough to endure.  The entire visit was kept exciting because, “I am going to meet the Phillie Phanatic,” Kelsey told anyone who would listen.

Jake Arrieta of the Philadelphia Phillies had impeccable timing to offer his suite for a charitable night for Kelsey’s Kaleidoscope, Inc.  All day long, sporting her Phillies shirt and hat, Kelsey remained positive and focused on the game and a chance to meet the  Phillie PhanaticThank you to the Arrieta family and our generous donors for making the evening full of fun.  Though they did not win the game, we came home positive and grateful after a long two days.

Storms we hope will pass

Each Tuesday night is unique.  The worry is constant and fear, worry, and sometimes anger are typical discussion points for most of the evening.

Tuesday evening was no different this week.  The marks all over the belly and the back were.  After a nice walk around a park and calming conversation, we thought our bedtime ritual would contain the easing of fears and the notion of sweet dreams ahead.

Instead, photos were taken, prayers were issued, and we are once again reminded of the mixed emotions we know the morning will bring.

The thunder outside echoes our inner fury and angst.

We hope the rain relieves the heat and our morning medication subsides our worry for another day.