Dear friends, and friends of friends,
We feel now is the right time to share something with you all.
What might seem perfect on the outside from our posts and happy photos on-line, isn’t quite as rosy as it might appear.
When baby Zach was just 23 days old Jen and I got the scariest phone call of our lives from Great Ormond Street Hospital. His Heel Prick Test results were back. This is a test that all new-borns get at around 5 days old. We were asked to bring Zachary in for further testing, first thing the next day, as he was suspected of having Cystic Fibrosis.
Our lives went from being on Cloud 9 as brand new parents to what felt like the deepest depths a mummy and a daddy should ever have to sink to.
We’ll spare you the details but our worst fears were quickly confirmed that our beautiful little boy, Zach, does indeed have Cystic Fibrosis.
Please don’t start googling CF as there are some crazy stories out there!
Here is a link that will give you an insight into our (not so) new but very different world.
Things have somewhat settled down now but the first few months were nothing like what we had envisaged parenthood would be.
In order for us to try and get our heads around this crazy situation we thought that we would put ourselves in a crazy situation.
We will be taking part in the Great Strides 65 Trek. The challenge is to trek 65km around the Peak District in just 17 hours or under. Then we thought, why not try and raise some cash. So far our team consists of the two of us, my eldest brother, Robert and my youngest sister, Stephanie and her good man -Evan.
In addition to this there are many people in the background helping out with the behind the scenes stuff. Like; the designated driver to meet us at various checkpoints to patch us up and send us on our merry way – thanks Dad, baby-sitters – thanks Jacqui and Dave and dog sitter extraordinaire– thanks Conor! I’m sure this list will grow as time passes but without these guys on-board this could not happen!
There is plenty of opportunity and many different ways for you all to get involved.
This genetic condition is, as yet, incurable. So our fundraising will also help us knowing that the money raised will get us one step closer to better treatment and who knows, maybe, one day, a cure.
The good in this is that we can raise as much awareness and money as we can, while at the same time knowing we will have to shift a bit of timber to get in shape to complete this bonkers challenge.
I am proud to say that Jen has been exceptional with her fitness DVDs and is now pre-pregnancy weight and getting fitter by the day. I have dropped 2 stone since June ‘17 and have just joined the gym so will be seeing better results.
This takes place on 07/07/18. Just over a year since we entered in the world of CF. This gives us a realistic amount of time to drop to our goal weights and increase our level of fitness.
We don't want sadness or madness from you but happiness, love and light - and maybe a few coins if you feel that way inclined - to help us reach our target!
We will be paying for the event entry fee so that means 100% of the sponsor money will be going directly to the CF Trust.
The conundrum we have is that we are private people but if we stay private then we would not be able to raise awareness for CF or some much needed cash for research. Also, neither of us know anyone that has it either acutely like Zach does, or as carriers like Jen and I are. We have learnt a lot and would be more than happy to chat with anyone in a similar situation to show that with the right support and guidance anything can be taken on.
Our families are all really proud of us both for being able to take on not just the challenges of being first time parents, but also for everything that goes into caring for our little baby who has CF.
We guess that's it really. We are on the biggest learning experience of our lives while Zachary just seems to smile through it all. And he, our dear friends, is what keeps us going.
Please feel free to share this as widely as you can in order for us to reach as many people as possible. Cystic fibrosis (CF) is one of the UK's most common life-threatening inherited diseases, and the more people who know about it (and support it), the better. Thank you!
Please get in touch if you want to get involved in any way.
Jon, Jen and Zach x
raised of £1,000 target
by 92 supporters
Jon and Jens Great Strides 65 in the Peak District
65 km trek in under 17 hours for vital funding for Cystic Fibrosis Trust because our son has CF and we want a cure to be found.
raised of £1,000 target
by 92 supporters
We work throughout the UK with one mission to beat cystic fibrosis for good
Charity Registration No. 1079049 (England and Wales) & SC040196 (Scotland)