Parents seek physio machine to treat daughter's rare condition

By Martin Johnston

Ashlynn Kingsford needs daily physiotherapy to help remove mucus from her lungs. Photo / Supplied
Ashlynn Kingsford needs daily physiotherapy to help remove mucus from her lungs. Photo / Supplied

Ashlynn Kingsford's organs all work well - but they are on the wrong sides of her body.

The 3-year-old's right lung is on her left side, the left is on the right, her liver is on the left and her heart is on the right.

The misplacement itself doesn't cause any problems but a related condition that means the cilia - tiny hairs lining the airways and some other organs - don't work, affecting the lungs, sinuses, ears and reproductive system.

Normal cilia in the lungs move mucus up and out, but in Ashlynn the fluid builds up, leading to coughing, a runny nose and chronic lung infections.

Her parents are trying to raise more than $18,000 to import a physiotherapy machine to help treat her.

"Most of last year she was probably out of hospital for a maximum of three months," says Ashlynn's mum, Nicole Ralston, of Palmerston North.

For the other nine months, spread throughout the year, the youngster with a bright personality was in hospital with repeated infections caused by a build-up of fluid in her airways, especially in the base of her lungs.

She is in Palmerston North Hospital at present, having been admitted on Sunday for treatment with intravenous antibiotics. It is thought she has pneumonia - for the fourth time - and is expected to remain in hospital for at least a fortnight.

Ashlynn has to have regular physiotherapy. This involves vigorous tapping with a cupped hand to move fluids up and out of the lungs.

"Once it starts to break things up it should increase coughing and it's the coughing that we want," Miss Ralston says. "But it's not without tears because she's the sort of child that doesn't like to be restrained, she likes to be in her own control."

Miss Ralston and her partner Adam Kingsford learned of a mechanical physiotherapy device available overseas which they would like to buy for their daughter. The "airway clearance vest" uses an electric pump to rapidly inflate and deflate the vest, vibrating the chest. It costs US$15,000 ($17,883).

They have not asked the MidCentral District Health Board to buy the vest because it is not funded by the public health system.

"It is from research we have looked into ourselves and people who have used them that has made us want to try for Ashlynn."

A spokesman for the DHB says it is evaluating the potential benefits of the physio vest for Ashlynn.

Professor Innes Asher, head of paediatrics at Auckland University, says the physio vest is not a standard treatment for the ciliary disorder.

To donate go to:
fundraise.givealittle.co.nz


Ashlynn's condition

• Several organs are in the wrong place, switched between left and right

• The cilia, tiny hair-like structures lining the airways, don't perform their function of moving mucus out of the lungs and sinuses

• Estimated to affect one person in 12,000

- NZ Herald

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