Family of girl with rare illness calls for help to complete Helen & Douglas House upgrade

Oxford Mail: The Lyon family, from left, Andy, Sienna, Ella, Kay and Jamie and, below, Helen & Douglas House The Lyon family, from left, Andy, Sienna, Ella, Kay and Jamie and, below, Helen & Douglas House

THE mother of a seriously-ill toddler, who suffers from seizures dozens of times a week, has called for people to support Oxford’s Helen & Douglas House hospice.

Two-year-old Sienna Lyon was born with a rare form of epilepsy and spends several weeks of each year at the hospice in East Oxford.

Her mother, Kay, said: “We’ve been visiting Helen House since Sienna was about seven months old.

“It’s so lovely, because it gives me time to play with her without doing all of the care. I feel so supported there, it has got a real family atmosphere.”

Generous Oxfordshire residents have given £500,000 towards refurbishment work at the hospice since last year, but that is only half of the amount needed.

The remaining money is needed as soon as possible to complete the work.

It will bring the hospice, which opened in 1982, up to modern standards of care.

Mrs Lyon, also mum to 10-year-old Jamie and Ella, eight, said: “Children are living longer, so there’s more that they need to cater for.

“It was looking a bit dated. There aren’t all the facilities in the room they need, like piped oxygen. You can see that with bigger wheelchairs for older children you couldn’t get more than one or two going down a corridor at a time. They need to be made wider.

“The spa, music, art and play areas are places we spend time together and they, along with the kitchen and dining areas, do need updating.”

Mrs Lyon, who lives with her husband Andy, a management consultant, in Wootton, near Abingdon, said: “You can’t keep something going for 30 years and expect it to last another 30 years without any work.”

Sienna has idiopathic generalised epilepsy, where mutations in her genes cause her to have a large number of epileptic fits.

Mrs Lyon said: “It’s a horrible condition. She once had 71 hours of continuous seizures, but then she can have weeks without any.

“Her development stopped at three months old, so she’s still playing on the floor and doing baby movements.

“I couldn’t bear to watch her fit at the beginning, but I’ve had to get tougher and get used to it.”

Helen & Douglas House cares for more than 300 children with life-shortening illnesses.

Its director of income generation Lindsey Rennard said: “We would like to thank everyone who has made a donation so far, but we do need to raise the final £500,000 by the end of the summer to complete the work to ensure our families from Oxfordshire can enjoy the most up-to-date facilities when they come and stay with us.”

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