Leah-may full of life
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.