Piper’s World is a campaign run through Just4Children, it has been set up to help raise funds for specialist equipment and therapies for Piper Corden. Piper is an amazing little girl who has a collection of rare genetic conditions which make life very difficult for her. These conditions include lissencephaly, nephrotic syndrome and osteopenia. The result of these conditions are daily seizures, chest issues requiring frequent suction, fragile bones prone to dislocation, hearing impairment and immune system suppression. In addition to this, Piper is not expected to develop cognitively beyond 3-5 months so is unlikely to ever walk, talk or have much use of her limbs and is also exclusively tube fed through a button in her stomach.

I’m Piper’s Dad, Sam. My friend Andy and I are running a half marathon (or you could say a full marathon between us…), to try and raise funds for Piper’s World. I am definitely not a runner and only started running in December. Before that the last run I went on was about 20 years ago, so my old knees, hips and bones in general have been suffering a lot and would appreciate your donations!

For people who live with disability and their families, achieving a reasonable quality of life can be very expensive due to the cost of specialist equipment allowing access to things that other people might take for granted. The NHS, and organisations like CHAS and Special Stars are, and have been, incredible at providing support, therapies and equipment, but it’s really important to us that Piper gets out and enjoys as many of the adventures that the world has to offer as she is able. Whether it’s getting up hills, going to the beach, going to music festivals or just finding supportive seating to allow Piper to sit at the table with us, our focus has always been on making her life as enjoyable and “normal” as possible. As she gets bigger though, the equipment we need to do this also gets bigger, more specialist and therefore more expensive.

Piper’s collection of conditions is extremely rare, with three other people existing in medical literature with anything resembling Piper’s symptoms, meaning we have very little idea what the future holds. There is no cure for Piper’s conditions and all of her treatment is geared towards quality of life.

Me and Charlie (my amazing wife and Piper’s amazing Mum) set up Piper’s World after some friends asked how they could donate something to help us with providing everything mentioned above. As soon as we did, the wonderful people in our lives contributed a genuinely insane amount of money which means that we have already been able to provide Piper with some new equipment. If you have already donated, please don’t feel the need to do so again. Both Charlie and I still feel a bit weird about creating and sharing Piper’s World, but as we’ve said before it’s not about us, it’s about Piper, and she is the absolute best.