Charity set up in memory of hospice patient to raise funds

A man has set up a charity in memory of his wife to raise money for St Barnabas Hospice in Lincoln.

Mother of three Simonetta Cengarle died in August at the age of 47, nine months after being diagnosed with glioblastoma multiforme (GBM), an aggressive brain tumour. She was cared for by the hospice in her final days.

To honour her legacy, her husband Toby Desforges has set up The Tanto Cosi Trust to help support St Barnabas Hospice, Sue Ryder Care, The Brain Tumour Charity and projects which support the education of young women and girls.

The name ‘Tanto Cosi’ is Italian for ‘so much’ and would be used by Italian-born Simonetta as a way of signing off letters to her husband.

Toby said:

“Simonetta had the ability to leave a lasting imprint on the lives of all those that were fortunate enough to meet her. Her intellect, passion and humour were just some of her strengths. Simonetta was eloquent and imaginative but she was also down-to-earth and honest.

“When we got the news that Simonetta was going to die it would have been really easy to fall to pieces and panic, but with the support of St Barnabas Hospice we were able to make the experience far less traumatic.

“Their Hospice at Home team in Stamford were in the best possible position to manage the situation and they provided me with the information and support I needed to understand what would happen and how we would manage.”

Simonetta had dedicated her life to improving women’s services around the world and in the years before her death had trained as a birthing doula and a breast-feeding counsellor.

Toby explained that once Simonetta was diagnosed with GBM she had often observed that she’d had a wonderful and fulfilling life.

He said:

“Simonetta followed her dreams; she travelled widely, she read, she loved music, food, laughter and conversation but most of all she loved being surrounded by her beloved family and friends. In her last months of life she had dedicated her time to her children, family and friends.

Simonetta showed us all that half a life lived to the full is better than a full life lived only half-heartedly.”

Since its formation the charity has held numerous fundraisers and has donated £2,400 the hospice.

Toby added:

“The nurses from St Barnabas were consistently good and always turned up when we needed them. They were genuinely caring, genuinely competent and genuinely concerned. They were exactly who we needed during a time that was emotionally and mentally exhausting.

My only regret is that I did not contact St Barnabas sooner.”

For more information visit St Barnabas Hospice