Raising awareness of Toby’s rare condition

Toby Percival, four, who is helping launch the PINNIT campaign.'From the left, dad Andrew Percival, Isobel Percival, six, Toby Percival, four, mum Suzanne Waller and Lily Percival, nine.
Toby Percival, four, who is helping launch the PINNIT campaign.'From the left, dad Andrew Percival, Isobel Percival, six, Toby Percival, four, mum Suzanne Waller and Lily Percival, nine.
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Four-year-old Toby Percival is ‘nil by mouth’ and has been for more than three years.

Now he and his family are supporting the first ever UK awareness week for Patients on Intravenous and Naso-gastric Nutrition Therapy (PINNT) which runs until August 11.

The week aims to create consistent levels of care in all UK hospitals and ensure health care professionals work in partnership with patients and carers who really understand the challenges faced when feeding via a tube at home.

Toby lives in Barkisland and knows that it doesn’t suit him to eat normally and is very good with his line as he knows how important it is.

Looking after Toby is his sister Isobel, six, and Lily, ten, and parents Andrew and Suzanne who are always helping him.

But despite this Suzanne says it has been a very lonely journey, although the internet and Facebook have helped and she has just joined PINNT and hopes for a new local support group to be set up soon. This is why the family are supporting the charity’s first ever awareness week.

Suzanne said: “While it has been a hard journey we have willingly learnt to adapt and have accepted that this is our life. It doesn’t stop us or Toby doing anything and getting on with day to day living - it has made us closer.

“We live life to the full and enjoy everything as much as we can even if that means Toby carrying his backpack round and us with all his supplies. Toby has adapted really well, and while he finds it hard and sometimes gets frustrated, he is quite proud of his “special” button!

“We have been involved with many groups including PINNT, particularly on Facebook. Being able to talk to other parents in the same situation as us has made it much easier to deal with, plus sharing their knowledge and experiences and helping us to move forward.

“It would be good if there was a local PINNT group where we could meet up, rather than have virtual chats.”

Two new leaflets have been produced by PINNT to coincide with their awareness week highlighting the promises made in the NICE Quality Standards issued late 2012.

The standards promise the provision of training for patients, their carers and families to be able to use ‘at home therapies’ effectively, whilst also making the clear that the patient must be put at the centre of care by doctors and the whole healthcare system.

During the Awareness Week, PINNT will be uploading two new stories of adults and children on artificial nutrition every day which can be accessed via the home page www.pinnt.com. Toby’s story is on there now.