September Spotlight:
James "Jimmy" Hamilton

Kabuki Symptoms:  Jimmy presents with several of the typical underlying conditions found in Kabuki Syndrome to include: global developmental delay, feeding difficult (tube fed for 4 years), heart defect (Tetralogy of Fallot), pulmonary arteries, dislocating kneecaps, extensive dental issues and several sets of ear tubes.

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Jimmy's Story: 

Jimmy’s life started out much like a lot of Kabuki Kids lives do: Lots of surprises! Sandra had not experienced any challenges or problems, other than her water broke two weeks before Jimmy was born. This resulted in a dry birth, after which Jimmy was taken to Prince Charles Hospital in Brisbane so he could undergo heart surgery for the hole in his heart. He had a shunt placed at three days old and another at ten days old. This was the beginning of his complication medical journey.

Oral eating was a struggle for Jimmy. He started with an NG tube until he was around 19 months old and then had a g-tube placed. He had the g-tube until he was around 5 years old, but once it came out, he didn’t look back! Jimmy was also a late walker, not moving around on two feet until roughly age 3. But as with eating, he hasn’t looked back!

Jimmy spent Kindergarten through year 4 in the mainstream school. After a residential move, he spent years 5 to 10 in the special education school. Jimmy repeated year 10 and after a little shuffling back and forth, he finished years 11 – 16 in the mainstream school. While it’s amazing and obvious that Jimmy was determined to work hard to get back to the mainstream school, he also shared that he was bullied a lot there and made most of his friends at Hervey Bay Special School.

Jimmy says that his mom, Sandra, mostly raised him and his sister by herself, making sure they each got to school, appointments and field trips despite working a full-time job. Sandra made sure he made it to his numerous medical appointments and procedures. Thankfully, Sandra had some support from friends and family, but Jimmy credits his upbringing to his mom.

As an adult, Jimmy is a Volunteer Mascot First-Aid Officer. He runs his own all-abilities Futsal team, works part-time as a deckhand on a whale boat and part-time at a bistro. All of our Kabuki Kids (and adults!) are incredibly special, and adults like Jimmy give the rest of us hope that our child will be able to function in the world on his/her own one day. His passion for life emanates across his Facebook page and his determination and drive to keep learning and doing more is enough to inspire even the most successful CEO!

What are some of your favorite things?   

When asked about his favorite things, Jimmy shared the following: "I'm a volunteer mascot first aid officer ground official, and run my own all abilities Futsal team all while holding down part time work as a deckhand on a whale boat." It's clear that Jimmy really enjoys staying busy and surrounding himself with all things exciting.

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What is your relationship with your siblings like?

"I am closest to Clinton and Georgina, but I do have contact with my other siblings on regular occasions."

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What advice do you have for other Kabuki Syndrome families?

"Love all your children the same and do your best to make time for your other children."

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What advice do you have for parents of "typical" children?

"We are not wired or different, we just want to be included just like any other human. We have feelings and want to do our best at things we love doing. Yes, we may not be in the big leagues, or be a CEO of a major company, but please treat us with respect. And if you see us in public and it looks like we may need help, just come over and ask, or even come over and say hi instead of looking at us and staring. You never know what's going on. We just need to talk to someone. Give us a smile."

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