Jago's Journey

Our beautiful boy Jago was born at full term on 06 April 2023. After a healthy pregnancy, at just 5 months old we were heartbroken to be told that Jago suffered from an incredibly rare genetic disorder called CACNA1E with only a handful of cases that we know of worldwide. The rarity of his disorder means there is no cure and the correct treatment is unknown as every child is different.

Jago's prognosis is uncertain, with many children being told they will never walk or be able to communicate. Most sufferers have limited life spans, but with the right care and treatment we believe Jago can defy the odds he has been given. We will never give up hope.

We are fighting tirelessly for Jago and are determined to give him the best chance of reaching his maximum potential and leading the very best life he can. This means extensive and continuous therapy throughout his life including physiotherapy, hydrotherapy, occupational therapy and speech & language therapy. And that’s just the beginning! We also want to be able to provide him with any equipment that he may need to help him on his journey.

Finally, we know along the way we will need the support of some truly wonderful charities, so we also hope to support and help them be available to as many children with extra challenges as possible.

We will be continuously fundraising for Jago and will post regular updates on his journey. Thank you for reading our story and for helping us to give our boy the best start in life.

Gemma and Daryl xx