A special fundraising evening is being staged on Saturday to support two adventurers preparing to climb Kilimanjaro in aid of a baby living with a rare genetic condition.

Rory Honeychurch and Brandon Horn will be climbing Mount Kilimanjaro on September 8, 2025 for the charity Cystinosis after Rory’s nephew, Kobe was diagnosed with the condition.

Cystinosis is a rare genetic condition that only affects an estimated 2,000 people worldwide.

A mutation in the CTNS gene causes cystine, an amino acid, to accumulate as crystals in various organs and tissues, including the kidneys, eyes, pancreas, muscles and brain. This can lead to kidney failure, muscle and bone problems, swallowing and feeding difficulties, diabetes, hypothyroidism, photophobia and more.

To help raise money for Rory and Brandon’s fundraiser, Kobe’s family have organised ‘Kilimanjaro for Kobe’ which will be an unforgettable night filled with live music from the band Vicious Kitten, a luxury prize auction, great food and community spirit.

‘Kilimanjaro For Kobe’ will take place on Saturday, August 16 at Strawberry Fields in Lifton. Doors will open 6:30pm until late.

The auction has prizes such as a dyson air wrap, a hot air balloon trip, a £500 tattoo voucher and many more goodies up for grabs.

Rory’s nephew Kobe was diagnosed in October 2024 after the ten-month-old had a sudden period of his weight staying static then declining.

Rory said: “His mum, Hayley, kept persisting for an appointment, despite being told many times that they believe Kobe’s weight to be purely situational due to all the emotions and stresses of Hayley losing her dad, Mark, around this time. They eventually got a paediatrician referral, and it was then that a blood test showed that something was seriously wrong.”

Kobe has a gruelling medication schedule currently consisting of ten different medicines that he has to have multiple times throughout the day and night, constant hospital appointments, and regular blood tests to monitor his levels.

All of these medications and the condition itself results in endless amounts of vomiting.

As cystinosis also affects the eyes, Kobe has to have eye drops four times a day; a build-up of crystals in the eyes can make his eyes sore and sensitive to light.

Following a short time with a nasogastric tube, Kobe then went on to have surgery in December to have a gastrostomy fitted, which allows him to have his medicines and high-calorie formula fed directly into his stomach.

One of the biggest challenges that Kobe has faced so far has been poor growth/weight gain, which is extremely common for children with cystinosis. Due to vomiting issues, Kobe is currently on a 20-hour continuous feed in the hope that he will keep it down as it goes in at a slower rate.

Cystinosis Foundation UK Provide support to anyone diagnosed with cystinosis, as well their families and friends and support research into the condition.

Tickets can be purchased on the door or by messaging Holly Honeychurch on Facebook.

Donate to the fundraiser by visiting: https://www.justgiving.com/page/honeychurch