Luca Toland-Ogg, or Luca Boy to most, was a beloved son of Maddi and William, best brother to Rosie and loved by everyone who knew him. He lived with an extremely rare condition, Lesch Nyhan Syndrome, which affects around 1 in 380,000 boys. This rare and complicated disability is a spectrum but some of the complications faced by Luca were, high muscle tone, developmental delay, high levels of uric acid (affecting kidneys) and behaviours that led to self injury which resulted in the removal of his teeth. There were many things that affected Luca’s day to day life including the requirement to be fed through a peg and a very specialised wheelchair that meant only a specific type of car could be used by the family.

Luca loved so much about life, chocolate buttons, Tractor Ted, Mr Tumble and most of all - adventures with his family. There was nothing Maddi and William wouldn't do for Luca; they are the very definition of amazing parents and that will never change. Rosie is his little sister but will always be his biggest champion and best friend.

Luca lived for 8 incredible years, and the memories of his life will last a lifetime.

However, there were also a lot of struggles for Luca along the way. The extreme complications of his disability meant that Maddi would be his full-time carer and, especially in his later years, William was only able to commit to very part time hours as Lucas needs became more complex.

In March, Luca went into hospital for a necessary hip operation which turned out to be successful. Yet, his aftercare proved extremely complex and this would see Luca and his family spend the next two months in hospital, in pain and with life altering injuries. This period was difficult for all, and it was a relief when, eventually, Luca was allowed to go home following specialised equipment being installed in the family home. However, being at home was also very challenging and within a week, Luca had been admitted back into hospital where he spent more time after it transpired, he had broken his leg. He returned home and spent time in his newly decorated, space theme bedroom and enjoying trips to the duck pond before he was rushed to hospital on Sunday the 5th July which would ultimately be his last hospital visit. The week was intensely painful with Luca spending time in ICU with life threatening complications until he passed, peacefully with his family on Thursday the 9th of July 2026.

Maddi, William and Rosie spent time with Luca as what was described at their last camping trip together. His untimely death has been extremely painful and difficult for everyone, and we thank you for your support during this time.

As the family relied on disability, carers and motability benefits for their financial survival it means that they are not only grieving the death of their beloved child, but are now facing severe financial implications with immediate affect.

As a family, we have created this GoFundMe to help alleviate the financial burden as much as we can. The family need a car as theirs will be taken away within the next 2 weeks, there are memorial costs to be covered as well as general living expenses. We hope in generating some financial relief for them, it will allow them time together as a family to navigate what is the most difficult time in their lives. We appreciate that the current climate is difficult for so many, so we are extremely grateful for any contribution, even if that is a share of this fund.

Thank you again for any support you can manage.