Jai’s Journey

Jai standing with his mother, Pam, and they are holding a certificate with a Sense Teddy bear.

Sleigh bells weren’t the only chimes heard in December as the world was gearing up for the festive season. Down a colourful corridor in Coventry Hospital, one bell rang out the louder than most.

Four years ago, Jai was diagnosed with Alstrom Syndrome which is one of the rarest genetic diseases in the world. Not only does it affect your vision and hearing but also makes you susceptible to other conditions such as diabetes. Since the diagnosis, Sense was there to support Jai and Pam through all that was to come.

A year later, while still getting to grips with the difficulties of living with Alstrom syndrome, Jai started losing weight. When this was raised with the doctor, he immediately sent Jai off for tests. The wait was agonising, and the results were crushing. It was Leukaemia.

This devastating combination meant that Jai was the only child in the UK with both conditions simultaneously and, as this was so incredibly rare, little research had been done on treating both conditions. Fortunately, Jai had his mum and brother at his side. Together, they fought the effects of nauseating treatments, spent nights walking through empty hospital corridors and travelled countless miles chasing every and any hope for success.

Jai’s treatment was proving successful but it was still taking its toll. He was sick, tired and his hair had started falling out. Then came the moment when Jai was going to have his head shaved but, true to her nature, Pam was not going to let Jai do this alone. She too shaved her head to support her son. This bond between mother and son proved inspiration to all who saw it.

As the treatment continued, Pam and Jai met more people, and as they met more people, they had more support. Neighbours offered to make Jai his favourite samosas, while colleagues donated money to some of the organisations that supported him. After three years of treatment, Pam and Jai received the news that they had been waiting for. Jai’s treatment was over and his Leukaemia was in remission. There was just one last hospital procedure before being cleared, Jai had to ring the bell in the children’s ward.

This was an incredibly proud moment for the family and soon Pam was informing everyone who had been on this journey with them. While many had not been there during the hospital visits or the days’ sick in bed, each person had been there to support in some way or another.

The big day came as around 40 people crowded the corridor in the hospital to watch Jai finish his treatment. There was plenty of laughter and plenty of tears as the nurse read the poem on Jai’s certificate.

‘Ring this bell three times well

It’s toll to clearly say,

My treatment’s done, this course is run

And I am on my way!’

The bell rang loud as cheers filled the halls. Their story is far from over but there has been no better way end the year.

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