Keigan's once in a lifetime holiday to Japan

Hello all. My name is Ann and I am fundraising for my severely sight impaired 17 year old Son Keigan. He has a rare genetic disorder called Stickler Syndrome. Over the past 4 years his sight has dramatically deteriorated. His central vision is virtually zero and he only has a small amount of peripheral vision out of his left eye. He is completely blind in his right eye. This is after numerous surgeries on both eyes. Keigan uses a cane and is starting braille training in February. Keigan's dream has always been to visit Japan. As a family, this would be a trip of a lifetime. This is fully inclusive of all travel, food, excursions and 3 days visiting Hiroshima. The trip is planned for September 2025 and needs to be paid by the 8th of June 2025. I would like to be able to upgrade the flights to business class to give Keigan the extra room for his joints. Stickler Syndrome also affects these. I understand and fully appreciate this is a lot of money, but Keigan would be able to fulfill his dream he has had since being a young child to visit Japan. All donations no matter how small or big will be very much appreciated. Please ask me if you have any questions regarding Keigan's condition or this trip. Thank you

The Syndrome

Stickler Syndrome is a rare genetic condition affecting connective tissue (essentially collagen), with variable symptoms. There are now known to be at least 11 distinct sub-groups of Stickler Syndrome, but the effect in each are typically in four main areas:

Eyes: Short sightedness, cataract and, in the majority of cases, a high risk of retinal detachment. It is the most common cause of retinal detachment in children, and the most common cause of retinal detachment running in families.

Hearing: ‘Glue Ear’ and hearing loss which may be either conductive, sensorineural, or commonly a combination of both.

Musculoskeletal: Hypermobility and progressive arthritis (any joint may be affected but most commonly hips, knees and lower back).

Oro-facial: Cleft or high-arch palate. Affected new-born babies may have small nose and under-developed (recessed) chin, although they usually mature as the child grows.

Although many other genetic conditions are rare, the Stickler Syndromes frequently unrecognised or undiagnosed. Around 50% of those with a diagnosis are being treated for a single symptom and the ‘dots haven’t yet been joined up’, so their diagnosis is likely to be incomplete with the potential for other effects or risks (particularly retinal detachment) to be neglected.

Diagnosis shouldn’t be a ‘lottery’, and where these symptoms start to build a picture it is important to get a specialist referral.