Leah-may full of life

Matamata Chronicle - - News - By LAURA MCLEAY laura.mcleay@wrcn.co.nz

ACOURIER van ar­rives on the doorstep of Janelle Rum­ney’s home – an­other box of med­i­cal sup­plies is de­liv­ered.

‘‘This is just a typ­i­cal day,’’ Ms Rum­ney said.

Her 18-month-old daugh­ter Leah-May suf­fers from the life threat­en­ing disease, cys­tic fi­bro­sis.

Di­ag­nosed at just four weeks old, LeahMay takes medicine 15 times a day when healthy and up to 25 times a day when sick.

Last week was na­tional cys­tic fi­bro­sis Bub­ble Week which is a time to raise money for peo­ple like Leah-May who have to deal daily with the ef­fects of this ill­ness.

Cys­tic fi­bro­sis is a con­di­tion which se­verely af­fects the lungs and causes thick mu­cus to build up reg­u­larly.

The pan­creas is also of­ten blocked and fat can­not be ab­sorbed. Leah-May is full of life. She loves to laugh, play on her swing in the gar­den and chase her sib­lings around the house.

But for Ms Rum­ney, her hus­band Phillip El­liot and two other chil­dren Jor­don, 3, and Tayla, 6, life will never be the same again.

They had to in­su­late their house to keep Leah-May warmer and they must con­stantly sani­tise their hands so no germs are passed on to her.

‘‘It can get pretty iso­lat­ing. If peo­ple have a sign of a cough or cold they are not al­lowed to visit and we can­not visit them,’’ Ms Rum­ney said.

‘‘I do worry about the oth­ers kids and how it might af­fect them as well. They have to watch her go through it – but they are just fan­tas­tic. They pre­tend to take medicine so that Leah-May will take hers.’’

Ms Rum­ney said when Leah-May was di­ag­nosed, doc­tors told them her life ex­pectancy would be around 20 years.

‘‘We orig­i­nally were told she was worse than she was. Now they say it might be 30 but you re­ally don’t know,’’ she said.

‘‘We just try to keep her healthy. We have physio twice a day for 30 min­utes, take plenty of vi­ta­mins and count calo­ries.’’

Cys­tic Fi­bro­sis New Zealand re­ceives very lit­tle gov­ern­ment fund­ing and fam­i­lies get prac­ti­cally no fi­nan­cial sup­port so Cys­tic Fi­bro­sis New Zealand helps out where they can and raises money to cover some med­i­cal costs.

In March, Ms Rum­ney ran the Ro­torua half marathon and raised more than $700 for her daugh­ter. There is no cure for this ill­ness. Suf­fer­ers can be put on the waiting list for a lung trans­plant to in­crease life ex­pectancy.

Play time: Jor­don El­liot spends time with his sis­ter Leah-May who suf­fers from cys­tic fi­bro­sis and pushes her on the swing.

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