Hi everyone,

We are raising urgent funds for a beautiful little boy, Luca, who has just turned 3 years old and is fighting an ultra-rare genetic condition called TUBA1A.

To put his condition into perspective, when we were told the devastating news that Luca would be born with this diagnoses we were told that he was the only known case in wales, looking at statistics when we have done research there are only 350 to 600 cases diagnosed globally. Because it is so rare, there is no standard blueprint for his care, and time is our greatest enemy.

Luca was originally given a heartbreaking life expectancy of roughly 10 years. Tragically, due to a recent increase in severe seizures and frequent respiratory illnesses, doctors have had to lower that timeline to just 4 to 6 years. Because he has just turned 3, our window of opportunity to change this outcome is incredibly tight.

Defying Expectations Through Love and Physio

But Luca is a fighter. Doctors have openly admitted that he has stayed out of the hospital far more than they ever expected. This is entirely down to the intensive, private physiotherapy and hydrotherapy that has had to be funded and provided at home with no added financial support. It has kept his lungs clearer, his body stronger, and kept him where he belongs: at home with his family.

We Know It Works: The Trial Success

Seeing the profound impact of this extra physiotherapy, his doctor strongly believes that getting Luca fully up and active will have the same life-prolonging effect.

We already know this is possible as when a specialist team came over from America, Luca got the chance to trial a Trexo Robotic Walking Machine during his private physio—and he did amazingly well managing to achieve an unbelievable 3000 steps in one day! Seeing him take steps, supported by this incredible robotic technology, proved without a doubt that this is the key to his future.

The Goal

To keep him well, we desperately need to buy a Trexo machine for him to use at home every single day. Being upright and mobile is vital to support his respiratory health, reduce hospital admissions, and keep him as healthy as possible.

Because these advanced robotic walkers are not funded by the NHS and have to be bought and imported from America, they cost roughly £54,000 to buy and import. We cannot do this alone, and we are running out of time.

Every single donation, no matter the size, goes directly toward purchasing this machine and buying Luca more time. If you are unable to donate, please share his story. You aren’t just funding a machine; you are funding hope, steps, and precious time.

Thank you from the bottom of our hearts.