On the 8th of September 2025, myself (Rory Honeychurch) & Brandon Horn are setting off on the huge challenge of climbing Mount Kilimanjaro to raise money for Cystinosis, a charity that’s very close to our hearts, in the hope of helping find a cure for my little nephew Kobe and others suffering from this condition.

A little bit about Kobe’s diagnosis…

In October 2024, at just seven months old, my nephew Kobe was diagnosed with a rare condition called Cystinosis. A disease that barely anyone, including many medical professionals, have even heard of.

Hearing this news totally turned Kobe’s family’s lives upside down, trying to come to terms with this rare condition and the fact that there currently is no cure. Up until this point, Kobe had been a happy, healthy, and thriving little baby. It was only a sudden period of Kobe’s weight staying static and then a gradual decline that made his mum, Hayley, keep 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. There is one specialist medication for Cystinosis called Cystagon, which is used to reduce the level of cystine in his body; this must be taken every six hours. The Cystagon medication is not an easy one to take; it has a really unpleasant smell and taste. Unfortunately, with all of these medications and the condition itself, it results in endless amounts of vomitting. As cystinosis also affects the eyes, he has to have eyedrops 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 tummy. 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 vomitting 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.

My brother Luke, and sister-in-law, Hayley, have spent numerous weeks staying with Kobe in Exeter and Bristol Hospital 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 firsthand.

Throughout all that Kobe has had to go through already in his short little life, he’s always such a happy little boy. They call them Cystinosis Warriors 💚.

A little bit about Cystinosis…

Cystinosis is a rare genetic condition that only affects an estimated 2,000 people worldwide. It occurs in about 1 in 100,000 to 200,000 births globally. With only 2 or 3 new cases in the UK every year.

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.

Symptoms of Cystinosis may include:

* Excessive thirst

* Excessive urination

* Vomitting

* Dehydration

* Electrolyte imbalances

* Poor growth/ weight gain

* Poor appetite

* and many more.

Cysteamine is a medicine used to treat cystinosis. It works by reducing the level of cystine, preventing the formation of crystals. When used early, cysteamine can slow the development and progression of kidney damage, delaying the need for kidney transplantation. This is a lifelong treatment that must be taken daily. Without cysteamine, most children with cystinosis will develop end-stage kidney failure before the age of ten.

Cystinosis commonly causes another condition called “Fanconi syndrome” or leaky kidneys, where the kidneys don’t properly absorb vitamins, salts, and minerals. This requires supplements to replace lost electrolytes, which can weaken the bones.

Anyone with cystinosis will be looked after by a number of doctors and professionals, which may include: a nephrologist, paediatrician, ophthalmologist, endocrinologist, geneticist, physiotherapist, speech and language therapist, and many more.

As this disease is so rare, the charity desperately needs as much help as possible to raise awareness and generate more funding. This funding will assist with research and the development of better treatment options. We really hope that a cure will become available in the UK one day soon for Kobe and all others affected by this complex, rare disease.

We would be incredibly grateful if you could support us on this challenge, by kindly donating any amount that you can, or by sharing this page, which will help all those living with cystinosis 💚.

All donations will go directly to Cystinosis Foundation UK and will be greatly appreciated.

Thank you all 🫶🏼

Rory & Brandon

Thanks for taking the time to visit my JustGiving page. Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.