Ant Marketing CHECT Charity football match

When our little boy was just 4 weeks old our lives completely changed. As part of the Sheffield Jessop’s Generation Study, we took part in a routine test where blood is taken from the placenta shortly after birth and screened for over 207 genetic conditions. We never imagined that anything would come back, but to our shock and heartbreak, it was identified that Freddie carries a mutation in the RB1 gene.

The RB1 gene plays a crucial role in controlling cell growth, acting almost like a brake that stops cells from dividing uncontrollably. When this gene is faulty, cells in the retina can grow abnormally, leading to the development of tumours. This condition is known as Retinoblastoma — a rare and aggressive form of eye cancer, usually diagnosed in very young children.

Following this discovery, Freddie was officially diagnosed with cancerous tumours in his eye. Since then, he has been undergoing systemic chemotherapy to shrink the tumours and help save his vision and, most importantly, his life. Due to the unique nature of Retinoblastoma and the genetic mutation involved, Freddie will need ongoing treatment, monitoring, and specialist care for the foreseeable future. This is to ensure any further tumour growth is detected and treated as early as possible, and to monitor for any secondary health risks associated with the RB1 gene.

While this is not the journey we expected, we are incredibly proud of how brave and strong Freddie has been. With the support of his amazing medical team, family, and friends, we are doing everything we can to give him the best possible outcome.

We’ve also been supported by CHECT – the Childhood Eye Cancer Trust. CHECT is a UK charity dedicated to helping families affected by Retinoblastoma. They provide emotional and practical support to parents navigating the shock of a diagnosis, ongoing treatment, and the long-term effects this condition can have. From one-to-one support and financial grants to help with hospital travel and stays, to raising awareness and funding critical research, CHECT is there every step of the way. They also work closely with medical professionals to ensure families receive the best care and information available.

Thanks to CHECT, we’ve felt less alone during this overwhelming and uncertain time. Their knowledge, compassion, and support have already made a huge difference to our journey — and to families like ours facing childhood eye cancer