When 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 firstname.lastname@example.org.