New lease on life for Dartanyon

Tell me how Dartanyon is doing?

Mostly really well – he has the occasional wheeze but that’s pretty rare. He now has two puffs of Ventolin instead of the six he used to have. Viruses usually makes it worse but exercise certainly doesn’t. He can keep running and he does a lot of exercise which keeps him strong.

Winter is still a problem. I get paranoid every time someone coughs next to him. You really don’t ever relax.

What sports is he playing?

He was runner up in the cross country at school. The fact that he is a medal winner is quite amazing. He is very excited.

He has started running club this year. They basically do a cross country run every Friday morning – and this is building him up every week. He recovers in the same time as all the other children.

It’s really surprising to me for an asthmatic to be a cross country runner. You think to yourself he won’t ever be able to do that with his condition. He has just shown me yes you can! He is amazing.

He picks up the tennis racket at lunch time and kicks the footy with his friends. He also does Taekwondo one day a week which is high cardio.  

How is he doing at school?

He is seven years old now and is in year two.

I’m happy to say we are slowly getting to the point where he is having less days off. He’s getting close to the recommended attendance that the school would like. So yes, a lot less days off school. Every day he attends school means better grades in the long run. We’re hopeful it won’t affect his education in the long run.

The school has been fantastic. They have an asthma plan and all the staff know what to do in the case of an attack. He currently has a teacher who is asthmatic himself. So there’s a great plan in place.

He’s also now at an age where he can tell the signs and he can tell you when he is struggling to breathe so he knows to come and get help now.

What other areas of his life have improved since you got his care plan refined?

The biggest improvement is freedom. When he was young we couldn’t go far. But now every school holidays we go down to Mandurah. The freedom to take him out on holiday is a huge improvement.

I can now leave him in the care of others and have a day to myself which is also a big improvement in quality of life for all of us.

For the household, it was very disruptive to go to the hospital all the time. So we have a much more normal household lifestyle which is less disruption to the rest of the family. Home life without the disruption means he has a much more stable life. It’s these little things that people take for granted that have made a big improvement.

What do you put the improvements in his health down to?

His lungs are getting bigger, which helps him to improve. The exercise he is doing is helping to build up the muscles in his lungs too.

I think we have also learnt to better manage it. Now that he is older and better able to self-manage it makes a big difference.

The respiratory specialists at PMH have been fantastic. They changed his medication and better helped me to learn how to better manage his condition. This education has really helped me to better plan the management process.

They also discovered and diagnosed him with Mannose Binding Lectin deficiency (MBL). It’s a genetic fault where he has low levels of the immune system protein that help him attack and fight viruses. Knowing this has really helped us to come up with a better treatment and management plan. We also now have medication to help stop any viruses he gets from multiplying and this is really helping for this particular condition.

Finally, the whole family gets the flu shot every year.

Do you think advancements in research have played a part?

100% absolutely the research has helped. It’s given him a much better quality of life. I’m an asthmatic and the treatment that they gave me at his age was vastly different. It never really worked and the side effects were greater. The changes that I’ve personally seen are due to advancements in asthma research and it’s made a huge difference.

If he was on the treatment I was on back in the day, I think he would be home every second day. That would affect his life, his education – everything really.

While a cure would be fantastic, I’m just happy in the advancements of how to better manage it.

The difference your researchers have made to him is huge. He is so proud to be a part of it.