Thanks for taking the time to visit Ian and Belle's JustGiving page.

If you don't already know, Ian has recently taken over as one of the trustees of Stickler Syndrome UK. It's a charity close our hearts because son Jack, wife Jacqueline and Jacqueline's Mum were all born with this condition. Ian will be running with Belle (the family's gorgeous Cocker Spaniel).

The new trustees are working really hard to make a big difference to thousands of people living with Stickler Syndrome across the UK. We're also working on collaborating across borders to share information, ideas and support where we can help to make a difference.

Stickler Syndrome symptoms are highly variable and include Vision Loss/Impairment, Hearing Loss/Impairment, Cleft Palate, Hypermobility and early onset Osteoarthritis. These can manifest at different stages in someone's life and to variable extent.

Accurate diagnosis is very often missed because of these wide variables. The condition is not always hereditary... it often occurs from a small genetic variation in a family with no previous history of it.

Our family's diagnosis came after Jacqueline and her Mum had already had early-life joint replacements and Jack had a massive pelvis and hip operation. We're somewhat fortunate in that this is the main symptom in our family's Stickler journey.

Some are less fortunate... they may be born with vision and/or hearing impairment, and/or with cleft palate. Or they may develop sight and/or hearing loss at any time thereafter. With all the symptoms, young children can be suffering with disability, fatigue and pain without even knowing this isn't 'normal' and unaware of the associated risks of loss of vision through retinal detachment.

Children are very adaptable and have been known to live with severe sight defects without sharing these experiences at a time when sight could be saved. A major risk is complete loss of vision in one, or both, eyes.

This is why we need to raise awareness of what is considered to be one of the most common rare diseases which is, ironically, also one of the most difficult to accurately diagnose. Testing and diagnosis is free at source through NHS England and by referral across the UK but frustratingly this doesn't appear to be widely known by medical professionals - we need to change this!

Ian and Belle are taking part in this year's 'Santa in the City' because we CAN see where we are going; we CAN hear people and other critical sounds around us; we CAN converse, eat and drink comfortably; and we ARE able to mobilise pretty normally (moreso Belle than Ian to be fair!).

Every penny Ian and Belle manage to raise from this event will be put towards raising awareness of Stickler Syndrome, promoting early diagnosis, and helping to make sure that these children's hospital appointments, treatments, and operations are as positive an experience that they can possibly be. After all, they are likely to be having a number of visits.

We know that there's not a lot of spare cash about in the current environment, but the smallest donations build up and would really help this amazing small charity, under its new trustees, to make a difference.

Whatever size, your donation might also go towards the cost of custom-made plush toys for little heroes undergoing operations in the early years of their lives. If this makes a difficult experience more positive, and helps them to accept their glasses or hearing implant just that little bit better, you would be a big part of bringing that heartfelt smile back.

Thank you :)

Ian and Belle

xx