A determined mum from Boroughbridge is speaking out to end the taboo around tube feeding.
Sara Sills’s daughter Mabel needs a feeding tube to survive and battle Nephrocalcinosis, a condition which affects her kidneys and her bowel.
To date the four-year-old has had to endure 20 operations and relies on the tube going into her stomach to provide all of her medication and food.
Although Mabel has embraced the tube as a friend that keeps her alive, even fondly calling it her ‘tubie’, she has had to grapple with taboo and stigma on top of the day-to-day struggles presented by her condition.
Mum Sara is urging the district to join her this week, in the national Feeding Tube Awareness Week, February 6-10, to think more about what Mabel, and other children and adults are having to go through.
Sara said: “When Mabel has to go out with her feeding tube, people can look and ‘say what’s that’? or they might say, ‘well you must be feeding them wrong’. When actually the tubes are to do with medical conditions, and they provide vital medication. There are a lot of reasons for having a tube. Without it Mabel would not be alive.
“People can look at you and wonder what it is, but I would just say go up and ask. There doesn’t need to be this taboo around them. The majority of people are fine about it, and I do understand why some don’t ask about it because you don’t want to impose, but just ask.
“Mabel is very proud of it, it is her life. She even says goodnight to her tubie. She is not afraid to show it off. She knows what it is for and what it does.”
Sara is also keen to spark conversations about feeding tubes to reassure other parents that they are not alone.
She said: “There is a lot of awareness out there for different conditions which is great, but feeding tubes don’t get mentioned as much. You don’t hear about it as often. I don’t think you would know about it unless you are in that position.
“So for parents going through this, it can be so daunting and frightening at first, but you are not the only person in the world going through it, even if you feel you are. You are not alone, there is plenty of help and support out there. I’m just trying to get that message across.”
Sara and her husband Chris are also completing running challenges to raise money for Leeds Children’s Hospital to thank them for their ongoing care and support of Mabel.
Chris is fundraising for Team Endeavour, which supports children and families of the Armed Forces. The charity helped to secure a hospital bed for Mabel at home.
Sara has set up a fundraising page for her Leeds 10K run at justgiving.com/fundraising/sara-sills, and you can sponsor Chris and his friend Andy’s 100 mile running challenge, by texting Team07 and the amount you would like to pledge to 70070.
To find out more about Feeding Tube Awareness Week, visit their website: www.feedingtubeawarenessweek.org or email Sara: firstname.lastname@example.org