Eddie & Louie have decided they would like to do a sponsored walk to the top of Snowdon, to raise money for a charity that supports those, and the families of those who live on artificial nutrition or are receiving treatment via a central line. What that actually means is those who are fed via a feeding tube or TPN.

They’ve chosen this charity as their little brother, Mathys, has had an NG tube since 8months old and recently had it swapped for a GTube (Button). The majority of his nutrition is given through his tube given he has difficulty swallowing along with Tracheobronchomalacia. He must also have all his oral liquids thickened to prevent any entering his lungs. There is very little awareness around feeding tubes so the boys would like to raise awareness as well as funds for Face Everything and Rise (FEAR).

FEAR run a variety of activities, day trips and an annual holiday during the course of the year and the boys have recently had the privilege of being able to join one of their activity days at Tamworth Snowdome, taking part in climbing, ice skating and a 1:1 ski lesson, by the end of which they were able to ski independently from half way down the slope. It was a brilliant day, they had a blast and can’t wait to join on the next one. The day also brought some more normality around feeding tubes, one of the boys attending was explaining a little more about his tube to Eddie and Louie, giving them a some insight into what life at school is like for him with a feeding tube, something they are curious about for their brother. It was also nice for me to speak with other parents about their journey and gets some tips on managing day to day as well as adaptive clothing available.

Each ski lesson is £150, FEAR make an amazing contribution towards this (£130 for the FEAR Child or Adult and £105 for a family member). The boys would love to raise enough money to give another FEAR member an opportunity to join these events so Eddie has set a goal of £100, with a minimum donation of 50p 🥰

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