Only two people in the world have this condition: Little Kyra is one of them

Kyra Lodge from Fitzwilliam

Kyra Lodge from Fitzwilliam

0
Have your say

LITTLE Kyra Lodge left doctors baffled before they worked out she had an extremely rare disorder.

The three-year-old from West Yorkshire is one of only two people in the world with a previously unseen blood disorder.

Her family felt she was not developing as she should and initially it was thought the youngster, who had been ill from birth and had a blue-hue to her skin, was suffering from cerebral palsy.

When she was two-and-a-half Kyra collapsed and tests carried out eventually led doctors to reveal she had developed a potentially fatal hybrid form of the condition.

The news was devastating for her family who not only had to cope with caring for Kyra but have also had to deal with the uncertainty her rare illness brings, with doctors unsure how the illness will progress.

Kyra’s mother, Heather Land said: “It’s terrifying.

“When she was diagnosed, for the first six months I didn’t stop crying and I had her sleeping in bed with me.

“I was back and forth to the doctor, but then I thought, ‘I have just got to get on with it,’”

There is only one other known sufferer of the condition, a child who lives with his family on the other side of the world in Australia.

Heather is constant touch with the Australian family as they know exactly what they are going through and it helps both families understand their children’s condition and offer valuable support to each other.

Heather said: “It’s unbelievable that he’s on the other side of the world.”

What makes the diagnosis especially difficult for her family is that because doctors have never dealt with the rare disorder, they do not know how Kyra’s condition will progress.

“Having contact with somebody who knows exactly what they are going through has proved a real comfort and the families can offer real support to each other – even if they live miles apart.

“I do have daily contact with his mum and I think it keeps us both sane,” Heather added.

Kyra, from Fitzwilliam near Pontefract, left doctors baffled until they discovered what was wrong with the youngster.

“One doctor decided to test her for something which they didn’t think she had, as they’d never seen it before,” Heather said.

“The test came back positive,” she added.

Kyra was diagnosed with congenital methaemoglobinaemia, a condition which affects how oxygen is carried around in the bloodstream.

Its symptoms include shortness of breath, headaches, dizziness, an aversion to exercise, fatigue and loss of consciousness.

Doctors told Heather that the condition was genetic and initially it was thought that the youngster had type two of the condition, which leaves her blood the colour of chocolate.

The news hit the family hard as sufferers of type two are unlikely to survive into adulthood.

“Obviously we were in bits,” her mum said.

She added: “They told us not to expect too much and for her to get worse but then she started improving.”

Kyra then underwent yet more genetic tests that revealed she had a combination of both strains of the illness – something doctors had not seen before.

Now the family, which also includes Kyra’s three-week-old sister Poppy and stepfather Jack Taylor are keen to do all they can to make sure any parents and children get the help they need when they need it.

The family have received support from Kids, a charity, which offers support to children, young people and their families and last night they organised a fundraising concert at the Pit Club, in Hemsworth.

The event featured bands and a bouncy castle and face painting for youngsters.

Heather added: “We just want to make sure that other kids and parents can have the help if they need it.”

For more information on the charity visit the website www.kids.org.uk

Back to the top of the page