An uncle will be climbing Mount Kilimanjaro with a family friend in the hope of finding a cure for his nephew’s rare 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.

Rory’s nephew Kobe was diagnosed in October 2024 after the seven-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.

Kobe has a rare genetic condition called Cystinosis.
Kobe has a rare genetic condition called Cystinosis. (Contributed)

Rory said: “My brother Luke, and sister-in-law, Hayley, have spent numerous weeks staying with Kobe in Exeter and Bristol hospitals for various procedures and medical management when he’s been very poorly. This has been really hard as they have had to be apart from their eldest son, Ellis, whilst in hospital. Not only have they had to become experts in his condition, being able to advocate for Kobe, they have pretty much had to become nurses in order to care for Kobe and administer his medication.

“It’s hard to fully understand and explain how much this impacts their lives until you spend enough time with them to see it all first-hand.

“Throughout all that Kobe has had to go through already in his short little life, he’s always such a happy little boy.”