A FAMILY who lost their baby boy suddenly to a rare condition are now raising money for the Oxford hospice that took care of him.

Toby Lynch was born to parents Zoë and Jake Lynch from Abingdon earlier this year, but after three months he suddenly became ill at the beginning of May.

He was taken to the Paediatric Intensive Care Unit at the John Radcliffe Hospital where he stayed for a week before his parents made the decision to move him to Helen and Douglas House for end-of-life care.

Four weeks after being admitted to hospital, Toby was diagnosed with an incredibly rare, recessive genetic condition called Isolated Sulphite Oxidase Deficiency.

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This condition meant Toby could not fully break down the sulphites in his body, and the chemicals eventually became toxic to his brain, resulting in several metabolic strokes and seizures.

Toby spent five weeks in the care of Helen and Douglas House before he died peacefully on June 13. Now, to show their thanks to the hospice for its caring and hard work, the Lynch family are fundraising on a Just Giving web page they have called Toby’s Legacy.

Mr and Mrs Lynch said the hospice team allowed them to be 'active' parents again, giving them training so they could take full responsibility for his medical care and take him home for a few hours.

Mrs Lynch said: “I think they were a lifeline to us in what was a really devastating and difficult time for Jake and me. The team were just phenomenal they are some of the loveliest people I have met.

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“I have lived in Abingdon all my life and you know that Helen and Douglas House is there and you know it is a children’s hospice, but you just don’t fully understand the amount that they do until you are unfortunate enough to be in a position when you need them. In our situation Toby died, but they are still looking after us now.”

She added: “People often think a children’s hospice must be a really sad place to be, but it wasn’t a sad place. The reason we were there was very sad obviously, but there was lots of joy there and lots of laughter.”

Toby’s uncle Mike Lynch said: “It was six weeks of a rollercoaster of emotions [but] Helen and Douglas House were unbelievably amazing.

"Jake and Zoë had an apartment up there, they didn’t have to worry about cooking a meal, they took care of every single need.”

Originally setting their fundraising target at £2,000 Toby’s parents now have raised more than £8,000 for the hospice in Magdalen Road.

To donate visit their Just Giving page: justgiving.com/fundraising/tobyslegacy