I am currently fundraising for a charity which currently means a lot to me at the moment. This is “The Sick Children’s Trust”

Our son Charlie’s story:

Charlie was born on 4th April 2024 at Harlow hospital and upon delivery was identified as having a rare (1 in 3,500) case of oesophageal atresia (OA) and tracheo-oesophageal fistula (TOF) , a condition which in summary means that Charlie’s oesophagus (food pipe) is not joined to his stomach, and therefore he is unable to swallow any of his saliva or be fed by mouth.

This condition is rarely diagnosed before birth so obviously came to a sudden shock to us when Charlie was born, within 7 hours of being born Charlie was whisked up to the Rosie hospital at the Addenbrooke’s in Cambridge some 30 miles away from home.The Rosie hospital is well known for being a regional centre of excellence for maternity and Neonatal care so this provided us some comfort and assurance that Charlie was in the best care.

Within 24 hours of being born Charlie had already undergone major surgery under general anaesthetic to attempt to correct both the OA and TOF, the surgery was successful for correcting Charlie’s TOF but we were advised he would need to stay in intensive care for a number of weeks until they could attempt the surgery again to correct the OA element ( the one stopping him eating / swallowing /feeding)

Charlie therefore won’t be able to leave the Neonatal intensive care unit until his next surgery is undertaken and he recovers from this, which is likely to be in late June.

Upon being transferred to the Rosie hospital in Cambridge we were immediately supported by “The sick children’s trust” , and were able to stay at their Chestnut House “home from home” for approximately 3 weeks.

Chestnut house is actually located within the hospital building, Charlie is in care in NICU which is located on the 2nd floor, and Chestnut house is on the ground floor, therefore this provides a safe place to go to sleep and rest in between visiting Charlie’s cot side.

By staying at Chestnut house we were able to visit Charlie at any time of the day, by just popping upstairs to check on him. The comfort of being so close to him during these first few weeks helped during this difficult and stressful time, the alternative to staying at Chestnut house would of been to book a local hotel or sleep on the hospital chairs, both of which are not sustainable options and the latter would most certainly affect the quality of your mental health and physical health after any prolonged time.

The charity provides these rooms to parents at no cost and due to their limited availability currently offers them on a priority case by case basis , these “homes from home” rooms are not funded by the hospital, so the charity relies solely on donations provided to keep these invaluable locations operational.

The charity currently runs 10 different “Homes from home” across the country , all within a short distance of a children’s hospital, all providing a place that parents can stay when their child/ children are receiving care in a hospital that isn’t local to their home address , this can create a sudden burden on them at a time when the primary focus for is to be there for their children:

What I am doing to raise money for “the sick children’s trust”

1) On the 25th May I will be doing a skydive from 10,000 Ft in Cambridge close to where Charlie is staying.

2) Throughout June I will be cycling 370 miles, (not in one go) this is part of the “Long ride home challenge”.

as part of this challenge I plan to complete at least one bike ride from the Princess Alexandra Hospital in Harlow to the Rosie hospital in Cambridge, a 33/35 mile route predominantly using National cycle route 11, this bike ride signifying the route that Charlie made by neonatal ambulance on the day he was born.

This rest of the challenge will take place during the whole of June , where I will need cumulatively ride 370 miles between the 1st and 30th June , this averages at a distance half a marathon , Every single day ! Or 92.5 miles a week.

Now anybody who knows me will know that I’m not an “avid” cyclist, in fact I only have a mountain bike and occasionally get out on it , (Strava has confirmed my longest bike ride was 10 miles back in 2022)

Therefore I plan on completing half of the miles required in on my mountain bike , whilst the other half being completed on my indoor bike . Distances completed on both will be recorded and updated by daily for record keeping and to see when I complete the challenge by.

It costs approximately £40 per night for the charity to support one family in one of its rooms.

Any donations little or great will Be much appreciated by the sick children’s trust, and will ensure that these facilities can be sustained and offered for other families who going through similar circumstances to Charlie .

Thanks for reading

Paul