Prom night arranged for seriously ill girl

A mum has been able to arrange a prom night for her seriously ill 11-year-old daughter thanks to the help of strangers.

Penny, from Stafford, has a condition called Sanfilippo Syndrome for which there is currently no cure. Her family say she is losing her ability to walk, so time is limited to organise the dance.

Her mother Kelly said she put out an appeal for help on social media, but "didn't think anything would come of it to be honest".

"[The prom] has just given us something to look forward to rather than sitting and worrying about things", she added.

Kelly said: "Since October we've noticed a decline in [Penny's] mobility and we'd really like to be able to get that chance to dance with her at a prom."

Because of her declining condition, Penny's family do not want to wait until her 16th birthday and plan to hold the event next August, for her 13th birthday instead.

Preparations started two weeks ago when the Moat House hotel at Acton Trussell near Stafford offered the family a function room for free.

It was their suggestion to make an appeal on social media and Kelly said: "Within 24 hours I was just inundated with local businesses and people just wanting to support and make this thing happen."

Within 48 hours just about everything was arranged and Kelly said it had been "amazing" to see it all come together.

Receiving Penny's diagnosis, just after her fourth birthday had been "devastating", Kelly said.

She said they knew something was wrong. but "never thought it would be a diagnosis that gave her a life-limiting condition".

Penny is losing the ability to eat and the family got her a feeding tube in January.

She is also losing her fine motor skills and becoming more sleepy during the day and Kelly said: "It's really hard to see your little girl struggle and to watch the skills that she's learnt in those first four years of her life."

With no treatment available and no luck getting on to a clinical trial, Kelly said the family knew they were just giving Penny palliative care and keeping her comfortable.

"We know that we're not going to get to keep Penny forever and it's hard not to focus on that," she said.

Kelly believes her daughter does not understand what is happening and said: "We always say that in Penny's head it's just constant Disney music playing."

"I think its easier because she doesn't understand."

But Kelly said as Penny loved to dance, loved music and was a "massive Strictly fan", she thought the prom would be perfect for her.

"We've got something positive now that we can look forward to and celebrate Penny," she said.

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