Gavin’s Trust Project: Building hope out of tragedy

Followers of my blog will no doubt remember last month’s sudden death of my friend’s 5-year-old son. Young Gavin had touched many people very deeply. He died on his mother’s birthday, and she asked that we do an act of kindness in his name—to which the Internet responded in breathtaking fashion. My friend Kate and her family also chose three charities to donate to in lieu of flowers, and again the response was enormous.

But the generosity of Kate Leong and her family did not end there.

You see, because Gavin was a special needs child, Kate learned a lot about advocacy. She saw the struggle to get things covered by medical insurance. She saw how much is NOT covered by medical insurance. She saw therapists who had to share equipment, which meant not every kid got the therapy equipment they needed every time. She saw schools making due with duct-taped communication devices because of underfunding for their programs. She saw so many people whose children did not have the advantages Gavin had simply because special needs ran head-on into financial need.

Once she saw, Kate could not unsee.

So this week, Kate unveiled Gavin’s Trust Project. She is raising money to donate to the Chester County Intermediate Unit (CCIU) for their Pre-School Multiple Disabilities programs—a group that did so much to help her son thrive and blossom, and yet are sorely underfunded. Kate knows that many families go without much-needed equipment at home because finances simply don’t allow it. CCIU can help with that—if they have the funds. Kate wants to help these other families and these wonderful therapists so that all the children they serve have the chance to reach their full potential.

Gavin’s Trust Project has already made its first tangible difference. With the astonishing amount of money left over from donations made to print Gavin’s memorial service programs, Gavin’s Trust Project has bought Gavin’s school classroom and school several pieces of equipment long on their wish list. More details of the project can be found here.

While Gavin may be gone, Gavin’s Trust Project builds a legacy in his name that will affect hundreds, perhaps even thousands, of children over time.

Please spread the word about this amazing project. That Gavin’s life was cut short is a tragedy; that his legacy will bring hope to so many is a miracle.

Gavin the Superhero

The World Lost A Superhero: Farewell, Gavin

On April 14, 2013, the world lost a superhero: Gavin Leong, age 5 ½.

Gavin & Kate

Gavin had the biggest heart I ever saw, so it is the cruelest of ironies that his heart was what failed him in the end.

Gavin was special needs, but most of us would describe him with just the first word: special.

I never met Gavin in person, which shocked me when I realized it, because I felt like I had. His mother Kate has blogged about his amazing journey from the time he was born, and took us with him on her blog Chasing Rainbows. Kate and her family allowed us unprecedented access to their lives, sharing both their joy and heartbreak. But Gavin’s house wasn’t the house of a special needs child…it was a house of miracles.

Gavin’s parents were told when he was a newborn that his issues were so severe that they should just “keep him happy.”

But his parents saw more potential in their son than the doctors did.

After a long stay in the NICU after birth, Gavin was home barely a few weeks and he was back in the hospital for a two month stay, battling two illnesses that should have killed him.

Kate and Ed were told Gavin had permanent hearing loss as an infant—until the day the audiologist told them his hearing was normal and he no longer needed his hearing aids.

They were told Gavin would never eat without a feeding tube. He graduated to pureed foods and some solids.

They were told Gavin would never sit up. He started walking unassisted at Christmas 2012.

They were told Gavin would never communicate. Two days before his final illness, he independently and repeatedly sought out and pressed a button asking for water.

Gavin’s body may have been frail, but his spirit was not.

Gavin did everything in his own time in his own way. He faced his challenges with patience and courage, and even when crying in frustration he continued to fight. He never gave up, and his parents never stopped believing in him and his strength.

We were so privileged to experience it with him. At his preschool, Gavin had the goal of walking the equivalent of a 5K over the course of the school year. When he made his final lap, the entire preschool lined the halls to cheer for him. Gavin probably never knew that he had an entire Internet cheering section as well.

When Gavin needed the final miracle that never came, so many, many people prayed for him, rooted for him, and sent him positive thoughts. Many people displayed the Super-Gavin logo.*

Super Gavin Logo

Sometimes it seemed as if half my newsfeed had changed their profile pictures to Super Gavin. People who had never met him, never read Kate’s blogs, shared it on their walls and sent their support. This little boy who couldn’t talk touched the world, and taught us so much.

He taught his mother the power of hope and faith.

He taught his father the power of unconditional love.

He taught his little brother the power of compassion.

He taught me to celebrate the everyday triumphs of my daughter—to rejoice in her running around even when she exhausts me; to find joy in her constant talking and singing even when all I want is a moment of quiet; to be grateful for her health and her love even in the whirlwind of life.

The answer to why Gavin was taken from us so early will never be fully understood. But the answer to why he was placed on this earth in the first place is clear:

Gavin was given to us to teach us the power of persistence, of hope, and of love.

And the greatest of these is love.

Farewell, Gavin. You are now free of the body that failed you so often in this world. You can talk and run and play with your grandparents, your sister, your twin, and your other siblings who never made it to this world.

The world lost a superhero today—and Heaven gained an angel.

Gavin's last missionGavin the Superhero

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