Brit girl one of three in world not able to walk or talk due to rare illness

A young girl is one of only three children in the world who has a combination of two rare, life-threatening conditions which leaves her unable to walk or talk.

Penny Morris, from Bodmin in Cornwall, is just six years old but has already known a lot of suffering as she has Trichothiodystrophy, which affects her vision, hearing, and leaves her unable to walk or talk, and Cockaynes Syndrome.

Trichothiodystrophy is already a very rare condition, only affecting one in a million people.

Combining it with Cockaynes Syndrome, another rare condition causing delayed development, short stature and the failure to gain weight, makes Penny's situation almost unheard of.

She has dwarfism and faces going through premature ageing, yet the doctors have confirmed there's no cures for either of her conditons.


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Originally doctors didn't think Penny would survive past age five but she has already proved them wrong. While they have revised their prognosis, she is not expected to survive into adulthood.

Yet while she faces so many challenges, Penny, who goes to Double Trees school in Par, Cornwall three days a week is really happy.

Penny's mum, Nicky, is her full time carer and has called her a "very happy, loving and sociable girl".

As well as Nicky, 40, Penny lives with her father, Jonathan, 44, and her older siblings, Rosie, 13 and Michael, 10.

Nicky said: "Penny is unable to walk or talk, is visually impaired, fed through a gastrostomy tube, has bone density problems and has to have fortnightly white blood cell transfusions.

"She has learnt some sign language, she can pull herself up on the furniture and she just loves to dance to music."

The family had no idea of Penny's difficulties until age two when she was diagnosed.

"Penny has a dangerous swallow and can't eat very much as her swallow gets very tired. We pump feed her overnight so she gets the calories she needs," Nicky explained.


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"She is so sensitive to UV rays that she'd burn in a matter of minutes. Despite all of this we try and live as normal a life as possible."

Nicky added that Rosie and Michael love the beach so they go as a family and take a UV proof tent so Penny can still play in the sand.

"She's lovely, so happy and loves to socialise. She can sign brother, sister, mummy and daddy and is so keen to communicate.

"We have so many hospital appointments and I've been trained to give Penny a fortnightly infusion of white blood cells."

While there's still certain places Penny can't go, like soft play areas and public pools, because the risk of infection is too high, the infusions have given Penny a better quality of life.

And soon the family are travelling to France to see professionals who may be able to give Penny guidelines and help slowdown the ageing process.

Nicky continued: "Trichothiodystrophy is life threatening and Penny is at increased risk before the age of ten.

"Penny's life expectancy is unknown due to the rarity of the condition but we remain positive."

Penny's family will be holding a charity bingo and raffle night in their home town on March 10 to raise money for two charities, Children's Hospice South West and a charity that supports families with children suffering from Cockaynes Syndrome and Trichothiodystrophy.

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