Race against time for Telford family before Sienna, 6, loses the ability to speak

Sienna Richardson never had any health issues until July last year, when she started to have hearing problems.

Within months, the Randlay youngster's condition started to deteriorate, her character started to change and she started to lose her ability to talk.

Finally, she was diagnosed with a rare form of epilepsy called Landau Kleffner syndrome, a condition that occurs in only one child in a million.

After unsuccessful treatment with steroids, parents Lucy and James have had to look further afield, and are now fundraising for a trip to to a private medical facility in Holland.

Off the steroids, Sienna's speech could completely disappear again at any time.

"This is all new to us," Lucy, 35, said. "Sienna had no health issues at all, and now she's suddenly poorly.

"It's inevitable she will lose her speech, and she wouldn't be able to communicate again. It was really scary for my husband and I to see this. It was horrible to watch.

"They hoped the steroids would hit it hard, but unfortunately it didn't. As she's been weaned off, she's losing her speech. She could have a complete relapse."

Generous people have already raised £4,000 to help Sienna, but the family still need another £11,000 to reach their target.

"It feels amazing," Lucy said. "My husband and I are humbled by everyone's donations and messages of support.

Anxious

"We were anxious to put it out there, but we can't thank everybody enough for helping us.

"We wouldn't be able to fund it ourselves. It's not something that's going to happen overnight."

Business development manager Lucy said the needed medicine, Epidyolex, should be available on the NHS.

"I get that it has to be medically trialled but I do believe it should be tested," she said. "It's been used abroad and it's worked.

"The NHS do prescribe it for two epilepsy syndromes. It works for them. I wish they could prescribe it for her."

In their fundraiser, Lucy and James, 42, wrote: "As parents we will do anything to get our daughter back to what she was and hopefully lead a normal life, therefore finding funds to take Sienna abroad to get this drug is our only option.

"Once we have this drug and evidence it works we can help other moms and dads fight the NHS to prescribe it in the UK.

"Sienna has asked her us to promise we will make her better and that's a promise we will try to make with your help."

Landau Kleffner syndrome usually occurs in children between the ages of three and nine. Symptoms for the condition include seizures while sleeping, and loss of language and skills.

It is usually not life-threatening, but quality of life can be seriously impacted.

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