Our beautiful little boy Luca is a remarkable three-year-old living with a very rare genetic condition caused by a TUBA1A gene variant. Luca is currently the only known child in Wales with his specific condition.

Luca also has his own Facebook page, “Luca’s Journey with TUBA1A”, where we share his journey, his progress, his therapies, fundraising and the challenges he faces. We would love for people to follow Luca’s journey and see how their support is helping him: https://www.facebook.com/profile.php?id=61594640932895

Luca has Lissencephaly Type 3, microcephaly, quadriplegic Cerebral Palsy, global developmental delay, epilepsy, sensory processing difficulties and visual impairment. He is unable to walk or talk and needs full-time care from us, his parents, every single day but it is important to know since all his private therapies Luca has come along so well he is a determined little boy

We are fundraising for a Trexo robotic walking device for Luca, which costs approximately £54,000.

Why Luca Needs a Trexo

The Trexo is a specialist robotic walking device that supports a child’s legs through a walking pattern, allowing them to practise stepping and walking movements with the support they need.

Luca was incredibly fortunate to trial a Trexo during an intensive private physiotherapy programme at Equinox Summer Camp in Crosshands. He trialled it for five days and was one of the first children in the UK to experience this technology.

During his trial, Luca was able to take supported steps and work on his head and trunk control. He was engaging with the movement and experiencing something that his physical disabilities normally prevent him from doing — walking.

As his parents, watching Luca take those steps was incredibly emotional. It showed us what may be possible when he has access to the right equipment and specialist therapy.

We know the Trexo cannot cure Luca’s condition or guarantee that he will walk independently. But it can give him something incredibly important — the opportunity to practise.

For a child who cannot independently practise walking, the Trexo can provide repeated, consistent and supported stepping practice.

Potential benefits of regular supported walking and weight-bearing include helping Luca to:

• Practise a walking pattern and repetitive stepping movements

• Work on strength and endurance

• Develop and maintain head and trunk control

• Work on posture and positioning

• Maintain movement around his joints

• Support his range of motion

• Help manage stiffness and tight muscles

• Support joint mobility

• Encourage circulation

• Support healthy bone development and bone density through weight-bearing

• Remain physically active despite his significant disabilities

• Develop greater awareness and participation in movement

• Continue working towards his own physical potential

For Luca, the Trexo is so much more than a piece of equipment.

It is an opportunity.

His Health and Therapies

Luca’s health can be extremely fragile. In July 2026, he was admitted to hospital twice, including spending time in a High Dependency Unit. He was very unwell and doctors were considering an operation because of concerns relating to his floppy larynx and respiratory difficulties.

Before Luca trialled the Trexo, we had been told that, because of the severity of his condition, we could expect him to deteriorate significantly around the age of four to six years old.

Hearing this as parents was devastating.

Since Luca trialled the Trexo and continued with his intensive physiotherapy and other therapies, we have seen such positive changes in him.

His respiratory team have been amazed at how well he has been doing, and the operation that had been under consideration has currently been put on hold because of how well he has been doing.

His consultant, Dr Thomas, has also told us that Luca is doing really well compared with some of the other children with lissencephaly that he sees.

We know that we cannot predict Luca’s future, but we do know that he deserves every opportunity to reach his potential and enjoy the best quality of life possible.

Luca already receives weekly private physiotherapy and hydrotherapy alongside hippo therapy which we pay for ourselves because regular therapy is so important for his health, comfort, strength and development. We also carry out exercises with him at home every day.

We have both had to leave our jobs to care for Luca full-time because of the complexity of his needs.

Our Fundraising

We have been doing everything we can ourselves to raise money for Luca.

We have organised a fundraising fun day, quiz nights and raffles, and we have even taken Luca to car boot sales to raise money.

We don’t mind how we raise it because every single penny counts for Luca.

We have had amazing support from our local community, including raffles for a night at the Marriott Hotel in Cardiff and two Swansea City tickets.

But £54,000 is a huge target for any family, and we cannot reach it alone.

Why This Means So Much to Us

We aren’t asking for a miracle.

We are asking for the opportunity to keep our little boy moving and have a childhood that isn’t lying in a high dependacy hospital ward

We want Luca to have the chance to continue practising walking, building his strength, working on his posture and control, maintaining movement in his muscles and joints, supporting his physical health and experiencing the joy of movement.

When we watched him take those supported steps during his Trexo trial, we saw a little boy who was determined to move.

We want to give him that opportunity again and again.

Every £1 brings Luca one step closer to having his own Trexo.

If you are able to donate, we will be incredibly grateful.

If you cannot donate, please don’t worry. Sharing Luca’s story could make an enormous difference. One share could reach somebody who is able to help us give Luca this life-changing opportunity.

Please follow Luca’s journey on:

“Luca’s Journey with TUBA1A”

https://www.facebook.com/profile.php?id=61594640932895

Thank you from the bottom of our hearts for taking the time to read Luca’s story, support our fundraising and help us give our beautiful boy the best possible chance.

With love,

Annalee & Mark

Luca’s mum and dad

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, they will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objectives. If, in those circumstances, we are unable to use all or part of the funds for the benefit of our child, any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.