Five-year-old girl has rare 'polka dot' skin condition

February 2, 2016  23:47

The family of a brave little girl whose rare ‘polka dot’ condition has touched the hearts of thousands have made a desperate plea. Matilda Callaghan has a rare birthmark which covers all her face and the right side of her body.

She now needs help buy a wheelchair that could change her life.

Doctors at Alder Hey children’s hospital have treated Matilda, aged 5, with laser surgery in an attempt to stop the birth mark spreading. It is the lasers which leave distinct “polka dot” marks on her skin.

The unusual marks can last two to three weeks and sometimes cause people to stare. But Matilda and her family have had to get used to them as medics think she may have to undergo treatment every two months for the next 16 years if they hope to prevent the spread of her birth mark.

The lasers cause bruising when they burn the blood capillaries under Matilda’s skin to prevent the mark from growing but the surgery is not cosmetic in nature - if it was not treated it the mark could grow and become deformed.

Matilda has an illness called Sturge Weber syndrome (SWS), a rare neurological and skin disorder, which means the birthmark is also internal and affects her brain, eyes and gums.

The youngster, from Leigh, has been having the treatment for three years.

The birth mark is on her brain which has caused her learning difficulties and epilepsy.

Without treatment the birth mark on her skin could bubble and bulge but it has already caused serious internal damage.

SWS has also caused Matilda visual impairment; epilepsy; glaucoma and paralysis in her left side.

The little fighter was also born with two holes in her heart and a pouch in her throat and has undergone over 30 operations, her first when she was just 24 hours old.

She also has digestion problems caused by Tracheoesophageal Fistula which means she was born without a tube from her throat to her stomach so doctors had to build one for her.

She can only say ‘mummy’ and ‘daddy’, ‘yes’ and ‘no,’ and communicates with gestures such as tapping her chin for a drink.

Paralysis and seizures have limited her mobility and her limbs are out of proportion which means she cannot walk.

But the specialist wheelchair the family are hoping to buy will give her more mobility and freedom.

Dad Paul Callaghan, 48, said only so much money would be allocated by the NHS towards a wheelchair, but the one which would best suit her needs is almost £5,000.

He said: “We want to be able to take her for walks in the countryside – we like to get out as much as we can.

"We use all our money to cater for Matilda’s needs so it’s hard to get holidays which would be our escape.”

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