Category: Newly diagnosed

The journey so far . . .

Screen Shot 2014-09-09 at 6.28.19 PMWhen Ollie was born on 9th July last year, we were unaware that we both carried the Delta F508 gene. It wasn’t until we received a call from our paediatrician some 3 weeks later to inform us of Ollie’s diagnosis that our world was (as it definitely felt at the time) turned upside down.

Wanting to understand as much as possible about this condition, we ignored the advice and spent hours searching online trying to get our heads around CF. Personally speaking, there can never be enough information to read and whilst some of it is irrelevant or wrong, researching the good from the bad is part of my approach in trying to be as informed as possible.

Like any other first time parents, our first year has been spent finding our feet whilst also working through the extra CF considerations, trying to second guess every little sniffle or cough and worrying if this might be the onset of a complication. Whilst this is still the case to a certain extent, we are now less likely to melt down when he’s picked up a minor ailment.

Ollie has been handling his daily routine of treatments with little complaint and on the whole has been relatively healthy throughout his first year. We did have an unplanned admission in June but he proved to be far braver and calmer than us in dealing with the hospital, needles and general anaesthetic. He has (touch wood) recovered well and is settled into day care. It is most definitely an evolving journey but after our first 12 months we are in a far better place.

I have joined the newly created SCH CF Parents Advisory Council in an effort to make a positive contribution to Ollie’s (and other CF patients’) ongoing treatment and to also access a forum where experiences and ideas can be shared first hand.  If you are interested in joining the CFPAC, please contact Jen Stumbles at jen@ecooutdoor.com.au.

 

Andy Harris

Looking to connect with other CF parents?

Screen Shot 2014-08-19 at 1.48.42 PMDue to the fact that we deliberately isolate CF patients from eachother, many CF parents feel disconnected from others who share their experience. In light of this we’re setting up a peer support network and will be looking for a parent in each of the following areas to co-ordinate a peer support group (essentially a regular catch up for CF parents in that area).

The peer support groups will be run informally by the parents, for the parents. They can be as often or infrequent as parents decide they want them to be, we just want to help you get started and we’ll help co-ordinate details to join on the Facebook page and also offer support and channel any information that comes from the care team.

 If you’re interested in being the ‘go to’ person for your local area, we are looking for one person (or more) in the following areas to put their hand up and organize the first coffee meet up.

 

  • Northern Beaches
  • North Shore
  • Eastern Suburbs
  • Western Suburbs

 

We recognise there are many families living further afield and we will look at the spread of families in those areas and identify the best way to engage the most families in each region and also whether we can connect families with a support group remotely.

 

If you are willing to put your hand up and organize the first coffee meet up in your area, please contact Kylie Black on sustainablefuture@hotmail.com.