Tommy Menkes Disease

Help Us Give Tommy the Best Life Possible

Our Brave Baby Boy with Menkes Disease

Hi, we’re Bobbie and Callum the proud parents of our beautiful baby boy, Tommy. He’s only 9 months old, and our world was turned upside down when he was recently diagnosed with a rare genetic disorder called Menkes disease.

What is Menkes Disease?

Menkes is an extremely rare and devastating condition that affects copper levels in the body. It’s caused by a genetic mutation that makes it nearly impossible for Tommy’s body to absorb and use copper properly—an essential mineral that helps develop the brain, nerves, and connective tissues.

Without enough copper, Tommy’s development is severely affected. He faces seizures, low muscle tone, feeding difficulties, and other serious neurological symptoms. Menkes is life-limiting. Most children with this condition don’t live past early childhood.

Why We’re Asking for Help

I never imagined we’d be in this position, but as parents, We want to do everything in my power to make sure Tommy has the best possible life filled with love, joy, and memories. We’re asking for help for a few key things:

• Comfort care and medical needs: Specialized treatments, therapies and equipment to keep Tommy comfortable and stimulated. If the opportunity of gene therapy becomes available over seas.

• Family time: Opportunities to travel and make lasting memories together—because we don’t know how much time we have.

• A beautiful goodbye: When the time comes, we want to give Tommy the send-off he deserves. Something gentle, peaceful, and full of love.

This is the hardest thing we’ve ever faced. It breaks my heart to even write these words. But we’re trying to make the most of every single moment with our little warrior. Any contribution, big or small, helps give our family strength and gives Tommy the chance to live his short life surrounded by warmth and care.

If you can’t donate, please consider sharing our story. Your kindness means more than we can express.