Our beautiful little boy Luca was born with a very rare genetic condition called TUBA1A. Luca is currently the only known child in Wales with his specific condition. This condition has caused Luca to develop Lissencephaly Type 3, microcephaly, quadriplegic Cerebral Palsy, global developmental delay, sensory processing difficulties, and visual impairment.

Because of the severity of his conditions, Luca is unable to walk or talk and requires full-time care every single day.

Luca faces many challenges daily. Alongside his complex neurological condition, he suffers from severe secretions which require regular suctioning using a secretion machine to help keep his airway clear. He is also extremely vulnerable to infections, and when Luca misses essential therapy it can have serious consequences for his health, including triggering clinical seizures.

Doctors have sadly told us that children with Luca’s condition can have a significantly reduced life expectancy, and we have been told Luca may only live until around the age of 10. Hearing this as parents has been absolutely devastating. However, we also know that some children and adults with lissencephaly have gone on to live into their 20s and even around 30 years old, and we hold onto that hope every single day. We are determined to give Luca the very best quality of life possible and help him achieve everything he can.

On 1st April 2026, Luca became very poorly with two serious infections which led to an admission to the High Dependency Unit. Seeing our little boy so unwell was heartbreaking and showed us once again just how fragile his health can be.

The NHS truly do their best and we are incredibly grateful for all the support Luca receives, but sadly services are limited and Luca needs far more physiotherapy and specialist therapy than is currently available. We carry out daily physiotherapy exercises with Luca at home ourselves to help keep his body moving and comfortable, reduce stiffness, support his breathing, and lower the risk of infections and seizures.

Alongside this, we have been paying privately for weekly physiotherapy and chest physiotherapy because we have seen just how much it helps Luca. While Luca still experiences absent seizures, for almost two years he had not experienced a major clonic seizure. Luca’s neurologist has told us this is likely due to how well he has been supported through his therapies, daily physiotherapy routines, and chest physio. This has shown us how important continuing these therapies is for Luca’s health, comfort, and safety.

Luca also relies on specialist equipment every single day including splints, supportive seating, mobility aids, and positioning equipment to support his posture and development. Due to his sensory processing difficulties, many everyday activities can also be extremely overwhelming and uncomfortable for him, meaning he requires additional support and specialist approaches throughout the day.

Luca is also visually impaired, but thanks to specialist equipment and therapy we have already seen amazing progress. He is now beginning to track objects and interact more with the world around him — something we were once told may never happen. These small milestones mean absolutely everything to us and show just how important ongoing therapy and specialist support are for Luca’s development.

These therapies and pieces of equipment are vital to give Luca the best possible quality of life, comfort, and chance at some independence.

As Luca’s needs are so complex, we have both had to leave work in order to care for him full time. As Luca’s mum, I also live with 15q13.3 Microdeletion Syndrome and have recently been diagnosed with vascular disease and seizures myself, which impacts my own health and ability to work.

We have already spent thousands ourselves trying to provide Luca with the equipment and therapies he needs, and we will always continue to do everything we possibly can for him. However, specialist disability equipment is incredibly expensive and costs quickly become overwhelming. We have had to organise fundraising ourselves simply to afford some of the basics Luca needs to support his daily life and development.

Some of the equipment and support Luca requires includes:

A specialist car seat coating 4000

• A Lycra vest costing around £600 to support his posture and movement

• A Leckey MyWay+ mobility aid to help support walking and independence

• Ongoing physiotherapy and specialist therapies

• Weekly private physiotherapy and chest physiotherapy

• Splints and positioning equipment

• Equipment to support his breathing, posture, and daily care

Every donation, no matter how small, would make a real difference to Luca’s life. Even £1 brings us one step closer to getting him the support and equipment he needs.

If you are unable to donate, we completely understand, but we would be incredibly grateful if you could please share Luca’s page to help us reach more people.

Thank you for taking the time to read Luca’s story and for supporting our brave little boy.

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.