Felix’s Journey: Help Us Support Our Miraculous Little Boy

Felix is a happy and cheeky 9-year-old with a very rare genetic brain disorder called Lissencephaly and Miller-Dieker Syndrome. Lissencephaly literally translates to “smooth brain,” meaning that during pregnancy, his brain didn’t fully develop the six layers of a typical functioning brain. Instead, it only formed four. This condition affects many basic functions that most of us take for granted, like swallowing food or even holding up his own head.

We (his mum and dad) had nearly 48 hours of blissful normality with our newborn before being told that something was wrong. At three months, we received the life-changing diagnosis: our baby boy would never walk, talk, and would have seizures. We were also told that most children with this condition don’t live past infancy.

Felix has daily life-threatening seizures and relies on a suction machine and oxygen. Despite these challenges, he continues to defy expectations, surprising both his medical team and us. The fact that he is now 9 years old is nothing short of a miracle, and we are grateful for every day we have with him. His smiles and cheeky grins leave a lasting impression on everyone who meets him.

To give Felix the best chance at making progress, we work closely with the NHS and a network of therapists to build his strength and maintain his health. Felix responds so well to the therapies he receives, and we believe this is one of the key factors in keeping him healthy. However, he is growing fast, and his seizures mean we now need to adapt our home to meet his increasing needs.

These adaptations will allow us to move Felix around safely, include him in all family spaces, monitor him at all times, and give him easy access to the garden. While the NHS and council provide invaluable support, the resources available are not enough to fully meet his therapy, mobility, and inclusion needs.

This is why we are raising funds—to provide Felix with the best possible therapies, specialist equipment, and essential home adaptations to improve his quality of life.

Thank you for supporting us and helping us raise funds for our truly miraculous little boy. Every contribution makes a difference in Felix’s journey, and we are deeply grateful for your kindness.

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