KIDS HELPING KIDS

Encinitas children help a friend with a rare muscle disease.

On hot September weekends, fast friends are made between young lemonade-stand entrepreneurs and thirsty patrons. On this day, however, the young entrepreneurs are raising money for more than just the latest Game Boy or a new music CD. They are raising money to help another friend and neighbor suffering from a rare muscle disease with no cure. Mitch Little (age 7) and Jessie Little (age 11) cheerfully braved the heat of the day to serve lemonade to passers-by so that Parker Hume (age 5) would get a little closer to a cure for the disease that has left him weakened and at times immobile over the past year.

Parker has an extremely rare muscle disease called Juvenile Dermatomyositis (JDM). This life-threatening disease affects the muscles and blood vessels, and makes it very difficult for Parker to do what most 5-year-olds can do. When he was diagnosed a year ago, he could no longer walk, move his arms or lift his head off the floor. He was days away from complete paralysis.

There is no cure yet for JDM, but Parker’s friends are determined to find one. His parents, Shari and Tom Hume, are starting a foundation to raise money to find a cure. Mitch and Jessie, Parker’s daily playmates, came up with the idea to run a lemonade stand to help the foundation.

“Parker is a really nice boy,” commented Jessie. “I don’t like to see him struggle and I what to see him cured. That’s why we run the lemonade stand.”

Currently, Parker is undergoing chemotherapy and taking several other strong medications to keep his disease from worsening. The medications have allowed him to move around but at a much slower pace than his friends. He especially doesn’t like to go to playgrounds because he does not have the strength to play and he feels sad that he can’t keep up with his friends.

JDM is so rare that most doctors will never see a patient with this disease. It is estimated that only 5000 children in the U.S. have JDM. For some children, it takes years before they get the correct diagnosis because the doctors are just not familiar with it. Parker’s pediatrician could not determine what was wrong, and suggested his parents take him to the ER because his symptoms were becoming so debilitating. Fortunately, the ER doctor referred them to a Pediatric Rheumatologist at San Diego Children’s Hospital, Dr. Sheets, who was able to diagnose JDM after a muscle biopsy.

“Mitch and Jessie are simply extraordinary kids,” said Shari Hume. “They told me they want to do whatever it takes to get Parker better. As Parker’s mom, it is natural for me to feel that way, but I find it very touching that his friends are as committed to finding a cure as we are. It really gives us hope that someday Parker will be able to join his friends when they go to the playground.”

The Lemonade Stand
by Pam Glusing

The boy put the finishing touches on the sign to announce their project for the day.
Mom helped put the umbrella in place, as it was going to be a scorcher of a day,
But given the nature of their project, the heat would more than likely drive more business which would be good.

So, they positioned their table just so by the edge of the sidewalk,
Made sure the lemonade was under the shade to stay cool,
and mounted the sign for their business on an easel that they took from someone’s playroom

 Then, they sat down and waited for customers to show up in droves.

The first 30 minutes went by quickly
They played games
Tested the lemonade to make sure it was the right consistency

No one showed up at first, but they didn’t mind for it was fun feeling like entrepreneurs on the verge of making their first million
And then, a car saw the sign and slowed down for it grabbed the driver’s attention
It didn’t say, “Lemonade for sale.”

It didn’t say, “Free lemonade”
And, it didn’t list a price per cup so that customers would know how much the cool beverage would cost
It simply said “To Cure Parker”
And was written in someone’s best penmanship in thick black marker

The woman got out of the car and walked over to the entrepreneurs and asked who Parker was and why he was sick.

His brother replied that Parker has a very rare disease and that the “proceeds” were going towards finding a cure to help him.
The brother also said today was a good day for Parker who on any given day cannot walk, lift his head or move much at all, but is never without a smile

The woman saw the five year old boy sitting in a chair under the umbrella and saw the biggest smile she had ever seen with a gleam in his eyes that reflected an incredible sense of joy, strength and sense of humor.

The woman didn’t bother to ask how much the lemonade was but simply emptied her wallet from her recent trip to the bank. 

She knelt down and shook Parker’s hand and said good luck with the stand today.  He smiled.

The other entrepreneurs thanked the woman and poured her a Dixie cup full of their homemade lemonade.  She drank it quickly and thought it was the best lemonade she had ever tasted.

The lemonade stand
Run by some kids with a very adult purpose
to find a cure for their friend, their neighbor and their brother.

To do what they can to raise money for a life-threatening disease. 
Making lemonade out of lemons.
 

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