This is Charlie, he is an epic toddler full of the joys of life and like all toddlers is relishing learning new things and new experiences however there is one thing that differentiates Charlie from other little toddlers his age. Every time Charlie falls asleep his body forgets to breath!

As all mothers know babies can fall asleep at the drop of a hat which has made the last 17months of his life traumatic to say the least, car rides are impossible solo, even a baby carrier or buggy walk illuminates enormous challenges.

Charlie first fell asleep 15 minutes after birth and then the exceptionally rare congenital issue became apparent, it took a while to diagnose as there are only 1,000 know cases Worldwide. He was finally discharged 4 months after birth, not the standard start to parenthood for my friend Sophie and her husband Chris.

This rare condition was caused by one small change in his chromosomal make up and is called CCHS, Congenital Central Hypoventilation Syndrome and in short means he must be attached to a ventilator when sleeping and have constant 24 hr supervision, carers come in at night from 10pm-7am to make sure the mask doesn't shift and monitor his CO2 and O2 levels to make sure they stay within safe limits. Everything most people take for granted.

The NHS have been fabulous throughout Charlie’s journey so far however their funding only stretches to a standard ventilation mask which does the job but as Charlie grows, they can cause facial deformities therefore a specialist mask is required. These are sourced in Denmark and the Danish doctor has to fly over to fit the mask to Charlies face to ensure a snug fit so the mask is fit for purpose, this process costs circa. 1,000 Euros per mask and currently will need to be changed every 3-6 months (to put this into context every time you shift up a baby grow size).

The aim of this fundraising is to generate some dosh for masks and specialist equipment.

What are the Mallocks and friends going to be doing to encourage you to part with your money.

We kickstarted proceedings last weekend, Rosie Belbas and I entered the Integrale de Rogneux, skiing touring with almost a thousand other people from Lourtier, this was our first foray into the competitive ski touring world and it was an amazing experience!

However we feel living in a village full of semi elite athletes and weekend warriors that we needed to demonstrate a bit more commitment.

We have decided to take a ‘Jack of all trades’ approach, attempting a little of everything from ski touring, running, biking (road and gravel), 123 Cross and I suspect we should throw in a relay triathlon (Lucy Russell I haven’t forgotten you) for good measure.

We will be drafting in good friends along the way, Rosie was my epic team mate on Saturday and has tolerated weeks of listening to me complain about my ‘hurty feet’ (a common theme for anyone who has bumped into me over the last 5 weeks). Thankfully on the day everything came together and we achieved personal bests on the ascent (no one told us about the boot pack section!!) and Rosie coaxed me down as spray on Lycra clad men hurtled semi in/out of control to the finish line!

Toby has enlisted the help of the Rose Warriors for the biking relay, they will be putting down their pink wine this summer and dusting off their moth-eaten padded Lycra for another mammoth challenge.

Even Caspar has nominated himself for the children’s duathlon at the 123 Cross.

So, panic not- there will be plenty of opportunities to pledge over the next few months.

We will provide updates on the events, some stats (everyone loves a stat) and also importantly updates on Charlie.

Medically he is a complicated little boy and has his parents on high stress alert constantly (they get blue lighted back into hospital far too regularly, the winter season with the onslaught of viruses and respiratory bugs has been particularly hard on their family). Toby and I are in awe of their composure, Sophie has been a dear friend since University and has inspired me with her strength and resilience. We hope your donations will help alleviate the strain for funding these masks and also ensure he can sleep soundly reducing any chances of facial deformities.

We only ask you to pledge once, as small or large as you can muster! Every little helps! Thank you!!

Events

L’Inergrale du Rogneux – Ski Tour

Tour du Val du Bagnes – Hill Running

123 Cross – Duathlon (Caspar aged 4)

La Cyclosportive Vin du Valais – Cycle

Lausanne 10KM