Jan & Ken Robinson: Helping families like their own, by funding life changing research

After the passing of their sons, Tim & Sam, Jan and Ken Robinson chose to honour their memory with a gift in Jan’s will. Jan’s incredibly kind gift of £10,000 will support the next generation of children who, like her own, face rare genetic diseases.

Jan and Ken Robinson married in 1975 after meeting in the romantic setting of Preston Prison. After graduating from a degree in Sociology (Goldsmiths London, 1966-1970), and after going on to work as social worker, Jan became a probation officer. A decision that changed her life.

Whilst on her training placement in Preston Prison, she met Ken, a Prison Officer who later became a Probation Officer himself. The couple were well loved and respected. Jan enjoyed a highly successful career. She was held in high regard and formed close relationships with many of the judges she worked with. She even received the Butler Trust award from Princess Anne, for outstanding work in the probation service.

The couple welcomed two sons, Tim born in 1978 and Sam born 7 years later in 1984. Jan’s brother Andy said, “at first everything with Tim seemed fine. But soon it became apparent that Tim had some growth issues. He did not speak but it was clear that he understood a great deal.”

Sam also faced some of the same challenges as Tim. Sam was hard of hearing and, despite being given growth hormones, he never surpassed 5ft in height. Regardless of this, Sam was a “bundle of energy'”. The whole family were loving and positive. They enjoyed and valued their time together, often taking family holidays to France.

Unfortunately, due to limitations in technology, neither Tim nor Sam ever had their conditions diagnosed, limiting the specific treatment they could be given. Both boys were under the care of the endocrine team in Manchester. Dr Peter Clayton met the family when he was a trainee on the team in the mid-1980’s. Now he is a Professor of Child Health at The University of Manchester and an NHS consultant.

Dr Clayton said, “I remember Sam and Tim very well. It was always a pleasure to meet all the family when they came for their Manchester appointments. We knew the boys had a condition, and a number of suggestions based on their clinical features were proposed. But, in those days, we did not have the tools to make a precise molecular diagnosis.”

Despite the best efforts of Dr Clayton and the endocrine team, Tim passed away shortly before his 16th Birthday in June 1994. Sam lived until almost 30, but passed away in June 2014.

Despite all of this, Jan’s brother stressed that “the last thing you could have ever said to Jan was ‘oh poor thing’.” Jan and Ken were both “full of fun and full of life” and Jan was always positive no matter what life threw at her. Even making the brave decision to travel to Australia and India by herself after Ken’s passing in 2015.

This positivity encapsulates Jan’s legacy. Determined to find the light behind every cloud, Jan made the kind and far-sighted decision to leave a gift in her will. This gift of £10,000 has been left to fund future research into rare genetic diseases, similar to those that Tim and Sam faced.

Jan sadly passed away in 2022 after losing a three-year battle with cancer. But her optimistic outlook on life remains her legacy, as Jan’s generosity will support the work of the same team who cared for her sons.

Today Dr Clayton and his team can find a precise diagnosis for children like Tim and Sam. Allowing them to “avoid unnecessary additional investigations. What was once research is now available routinely through the NHS.”

The team are now able to use genetic techniques to predict how children will respond to a treatment like growth hormone. And they can use genetic testing in early life to identify the children at highest risk. Enabling them to advise on lifestyle and health checks to prevent problems developing.

This early detection and prevention work is what Jan’s gift will support. In doing so, Jan has given families one of the greatest possible gifts; the chance to make more memories together. For this, we are incredibly grateful. Thank you!

You can find out more about how you can support life changing research with a gift in your will here.

Or you can contact Legacy Officer, Amy Harris, to discuss your wishes and ask any questions you may have.