Tag: #newviewforpan #raredisease @kelseys_kaleidoscope #chasingthecure #newviewforpan advocate

The loss of a loved one impacts everyone.  The loss of a child is a void that is unimaginable.  A tragedy struck a child we know and the weight this brings is a heavy.  

A rush to the hospital to return home without your child…a loss no parent should face.  We mourn and send strength to the family.  We pray for answers and peace in the days ahead.  

The family is surrounded with love, but their loss will remain forever in their hearts.

With the holidays ahead, hold your loved ones close.  For those with sorrow and grief, we see you and lift you up in our thoughts.

May love and hope find you this holiday season.

Sunday came and smiles faded. The reality of scans, single and team doctor visits, and pathology soon filled our headspace. The team of medical providers we have is world-renowned. Seeing them and providing both a PCR test and saliva test for access was also a first. There is truly no place like The National Institute of Health.

Gratitude over the level of care we have is always there. Being in this facility is truly difficult to explain.

However, there is also something to be said for the way we feel watching Kelsey give ten vials of blood, monitored by ultrasounds and liver scans, and meeting with so many doctors.

All of the worry and concern return when reality stands in front of you.

Kelsey, as always, is brave and strong. As we waited for one imaging study, Kelsey asked, “How many more years do you think I will have to come here to be studied? Aren’t we working on a cure?”

Yes, Kelsey, we are. The timeline is still tentative, but we thank you for helping Kelsey achieve this goal.

Until we reach that goal, thank you 💜

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Monday, July 11, 2022

The Legacy Club at Woodcrest Country Club

300 East Evesham Road

Cherry Hill, New Jersey

Brunch and registration start at 10:00 AM.

11:00 AM Shotgun Scramble 

Beer Cart Included

Prizes to follow Golfing.

$200 per golfer

RSVP – newviewforpan@gmail.com

Venmo @NewViewforPAN

3rd Annual Golf Outing

One Golfer $200.00 USDTwo Golfers $400.00 USDThree Golfers $600.00 USDFour Golfers $800.00 USD

The worry set in when the neurologist talked with us about the past few months and the difficult year Kelsey endured.  “When is the follow up MRI scheduled?” she asked.

”We have not been asked to complete one,” we responded.

”Let’s get her in today,” she replied.

“In order to facilitate the scan, Kelsey will have to go in without sedation,” was next stated.  Kelsey already faced six appointments before the MRI was scheduled and fasted most of the day as a result.  Tired, hungry, and worried we were.  But we smiled and said, “Of course.”  Then the worry truly set in…

As the pulsating vibrations and waves began, Kelsey was given headphones and selected her music.  Easier and Here with Me will never sound exactly the same…

Two tiny pink socks captivated our attention for the forty five minutes to follow.  One foot remained straight and steady as the other nestled over top.  They remained in that position for the duration of the scan.  As popular songs played, the view of an eight-year child sitting still through the loud MRI was amazing.  She knew it was important and she did it.

Tiny pink socks coupled with immeasurable strength made a routine scan an incredible accomplishment.

Our follow up showed no new damage, and our concerns dissipate for now.

@kelseys_kaleidoscope