One of the entertainers at the event was “Love Junx”, a Hip Hop Dance Troup of individuals with Down syndrome from Japan. Being pulled by the Troup’s music from across the park, Adam cupped his ear, signing to his parents that he wanted to go listen to the music.

Upon arriving at the stage where the performers were exhibiting their dance moves, Adam was overwhelmed with happiness, clapping and cheering.

When a front row spectator, sitting on the edge of the stage, left their seat, Adam filled the spot, and watched the dancers in amazement. Once the song ended, all of the members of the Troupe and some local kids filled the stage for one last dance.

A high energy Hip Hop song was played as the grand finale and all of the dancers grooved to the beat of the music. Soon, Adam was standing, trying to take part in the action from the side of the stage.

Seeing Adam loving the music made two of the older performers smile from ear to ear. Then the unbelievable happened, one of the performers came over and bent down to greet Adam.

They started dancing together and Adam soon reached up and took hold of the young Japanese performer’s fingers with each hand.

The performer swayed and grooved, teaching Adam to move with the music.

When the dance was over, the Troupe handed out a special gift bag to each of the children in the audience, containing small toys from Japan.

After all the bags were dispersed, the remaining dancers on the stage came over to Adam and his dad to say hello.

Although neither spoke each other’s language, the dancers and the Hank’s shook hands and tried their best to get to know each other.

Adam and his dad talked to some of the boys that spoke a little English. One boy had his face painted like a tiger and was very curious about Adam and his dad.

After talking for a while, it was made clear that the boy had his face painted the day before at Disneyland and was so happy to display the work of Disney, he had not washed it off for the Buddy Walk.

All of the dancers were warm and embracing, overpowering the divide of language, and uniting us with their kindness. Adam and his dad were overwhelmed by feelings of unity and friendship, by meeting their new extended DS family.

When it was time for the Troupe to leave the park, many of the dancer’s families requested that Adam and his dad pose in a picture with their child.

This was such a wonderful experience, and one that Adam and the Troupe will not soon forget.

Michael Hank, Secretary
DS Action

Today Gage is an almost one year old with a toothless smile and a love of lollipops. He sits in his Bumbo seat and watches cartoons with his brother or on his mother’s lap stroking her face.

Due to the dedication of Gage’s team of professionals at Rady Children’s Hospital-San Diego, he’s a healthy child with a positive prognosis. This wasn’t always the case.

Gage’s journey started a short six hours after he was born. His echocardiogram showed a heart that wasn’t functioning normally. Gage was born with a full AV Canal heart defect.

What that means is that his heart should have four chambers and two valves, but Gage was born with a heart with two chambers and one valve.

Gage’s first trip back to the hospital happened during his first week of life.

“Gage stopped breathing and turned blue,” said Mary Neesham, Gage’s mother.

This was the first of six hospitalizations in his short life. Gage had failure to thrive, which is a direct result of his heart not working properly.

“The poor baby was sleeping 23 hours a day,” said Mary. “He had trouble breathing and was very tired.”

At three months old Gage was hospitalized and had a “G-Tube” surgically inserted so he could get his nutrition directly. Several weeks later Gage went into congestive heart failure and had to have open heart surgery.

Gage underwent an extended two-part open heart surgery and then in another surgery had his mitral valve replaced four days later. His chest remained open for a week, covered by a large piece of surgical tape.

This was a very scary time for the Neesham family. With the support of his mommy, daddy, Greg, brother, Gavin and grandmother, Lauren, Gage began his slow recovery.

Gage’s team at RCHSD helped to get Gage off the ventilator and then wean him off the strong narcotics that he was taking.

After a month in the hospital, Gage finally got to go home.

“The day we left the hospital, I realized that Gage had spent more than half his life there,” said Mary.

My husband and I wondered how we were going to ever handle having such a special baby.

What kind of medical treatment would she require? Who was going to help us get her the proper care she needed? The first few months were overwhelming.

We were amazed at how many doctors Grace had to see and how many different therapy evaluations she was supposed to have.

Fast forward to 11 months later. My “baby” Grace is now almost a year old. This past February, we had our first appointment at the Down Syndrome Center at Rady Children’s Hospital-San Diego.

The center, its physicians and therapists were so helpful and knowledgeable! The Down Syndrome Center offers Grace access to experienced specialists all in one location.

Grace is able to receive coordinated medical care from a team of doctors and be seen by physical, occupational, and speech therapists that are all knowledgeable about the variety of conditions, issues, and treatments associated with Down syndrome.

The Down Syndrome Center has made the difficult process of obtaining medical care and referrals easier and less stressful to us as parents.

We are so appreciative to have a place where Grace can receive comprehensive care.

Please help our special children receive the special care they need.