Dream Big Little One!

We all have high hopes and expectations for our little ones, as a parent its human nature to want to see them succeed.  So, when Chester was diagnosed with Cystic Fibrosis, I felt like all those hopes and expectations were on hold and out of reach, because his future was too uncertain.  I understand no one’s future is promised, but when facing the diagnosis classed as “Life limiting” I found it too difficult to look to the future, we just had to live in that moment, one day at a time, whilst trying to comprehend the situation and come to terms with the uncertainty.

Days old…First ambulance journey

It’s also normal to wonder what sort of person your child will be and what they will become, will they travel, live a nomadic life, study for a profession and become a Doctor or a Scientist?  The reality for any parent with children Chester’s age, is that it’s way too soon for all that and they have a lot of living to do before they are in any position to make such decisions, but the ability to ponder those questions was just something I couldn’t bring myself to do.

Another admission

For me, those are the questions that have always been tough, and I have to admit to actively having avoided thinking about Chester’s future.  With his health all over the place, endless admissions resulting in huge chunks of time out of school, I always had to consider the fact that there would be certain things that were clearly going to be unattainable for him……………. that was until now!!

Yesterday was the first anniversary since Chester started Kaftrio and what a year it has been!  Kaftrio has simply transformed our lives, none more so than for Chester.  It has quite literally been a life saver!

It has given us back the most precious of commodities, time!  Not just in terms of life expectancy, but all that time that would have otherwise been spent in hospital or doing treatments.  It’s given Chester the chance to live a relatively normal life, allowing him to get involved with his friends and to take part in activities that once seemed almost impossible.

It’s been so life changing that from day to day apart from the morning and evening treatments and his medication with food, we often don’t even think about it, life feels more “Normal” than it has ever been since his arrival.

Pre and post Kaftrio

This past year has seen Chester progress from being unable to walk 100 metres to school without stopping to catch his breath or rest his legs, where we had to use wheelchairs to help him get about, to a child that is bounding around sports pitches taking part in sporting activities that at one point he could only ever dream of doing. 

Being unable to take part in most physical activity, Chester turned to TV where he began to watch sport, inspired by sportsman Nathan Charles, the former Bath Hooker, who played professional rugby despite having CF, Chester became more and more interested in the game.  A sport that prior to Kaftrio would have been near on impossible for Chester. 

Nathan Charles – Chester’s hero!

A year later and Chester is now an active member in the local Amesbury kids Rugby Club where he trains, keeping up with his teammates and even scoring the odd try.

Defensive Line!

Now, hoping not to tempt fate, Chester has been admission free for 71 weeks, that’s 16.5 months or almost a year and a half!  For us, that is a cause for huge celebration, considering pre-Kaftrio we were averaging 4 weeks a year minimum for admissions into hospital for IV antibiotics.  His health has improved so much that we have even started discussions about having his port-a-cath removed, which will remove even more restrictions for him and will allow him to progress to full contact rugby, which is currently his ultimate goal.

I have always been honest, never holding back when admitting just how tough the early years were, when we had to take each day as it came, overcoming each set back as they were thrown at us, and I look back now at the weeks and months we spent in hospital, the endless nebulisers and physio treatments, the sleepless nights and stresses strains and anxieties that CF bought for all of us, and I am so grateful that we now find ourselves with this happier story.

This isn’t a cure and this isn’t the end of his CF, I know there will be the curve ball when we are least expecting it, but for now, we are going to embrace life, enjoy the freedom Kaftrio has given us and I make no apologies about being the “Shouty Proud Mama” on the touchlines screaming and cheering for my child, because I know the sheer grit, strength and determination he has had to show, to get him to this point.

Living his best life at “The Hooters”

It’s your time now Chester, no dream is too BIG!

7 thoughts on “Dream Big Little One!”

  1. Another amazing blog Emma. It is difficult to remember Chester with no energy, no confidence and his many admissions. He has come such a long way .. and with his amazing Mummy, Daddy and big brother behind him he will continue to go far.
    Chester is such a lovable, strong and determined little boy …Kaftrio has certainly changed all your lives, but especially Chester’s. Miss looking after him so so much.
    You are a true inspiration Emma xxx

    Liked by 1 person

  2. Kaftrio has been a life changer for so many CF Warriors including my own two grandsons. It’s great to hear how much better Chester has been since taking it. Let’s hope that the 2% who can’t benefit yet will soon get their own wonder drugs.

    Liked by 1 person

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