The Locked-In Trust was set up in 2020 by Howard Wicks, and is a charitable organisation run by Howard and his team. The charity objectives focus on the aim of enabling other people with locked in syndrome to live their best possible lives. This will be achieved by researching, sourcing and providing a supply of the most up to date assistive technology, providing greater access to life and communication equipment, enabling them to benefit from the enjoyment of being able to interact with their family and friends in a variety of ways.
In addition, the charity aims to research and source appropriate holiday packages, with the necessary provisions for both the individual and their support team to have a well-deserved respite period, and valuable change of scenery. This will have a hugely positive impact on the on the mental well-being of all involved.
When Howard was 16, he suffered a massive stroke resulting in him living with locked-in syndrome himself. He is directly affected by the issues that are raised, and is only too aware of how difficult it is to obtain essential equipment to enable him to have a better quality of life. Howard is fortunate as he has been able to secure some extra devices and items of equipment that have allowed him to communicate effectively with his family and support staff. The flow of conversation is enhanced by a series of eye movements that Howard has developed, and alongside the additional equipment has made communication far more achievable than would otherwise have been the case. The extra equipment has made an immense difference to the way in which he can live his life and has helped to keep him positive and focused on his hopes and dreams.
Howard strongly believes that everyone with locked-in syndrome should have access to the equipment and support they need to enable them to live a full life without any financial worries, including getting out and about regularly and having trips away. This is a part of life that is often taken for granted, but when locked-in syndrome is part of the equation, it immediately becomes a monstrous task to achieve. Howard intends for the charity to enable this to become more achievable, by researching and developing appropriate packages tailored to make these holidays and trips not only a reality, but one that is relaxing, enjoyable and good for the mental well-being of everyone benefiting from it.
There are currently between 300 and 500 people in the United Kingdom with locked-in syndrome. Whilst this number may seem small, it is important to remember that each one of these people is part of a family unit, whether they are a parent, child, father, mother, brother, sister or cousin each and every one of them needs more support than they are currently getting. By purchasing and providing a range of up to date technology and communication equipment, the Locked-In Trust will assist these individuals to remain an effective and fully communicative part of that family.
Howard's long-term goal for the charity is to be able to support people with locked-in syndrome to live life in the same way as people without the condition. Whilst he realises his hopes, dreams and aspirations are not easily achieved in his lifetime, his ambition, drive and determination mean that he will give his all to accomplish as much as he possibly can to make everything possible for the next generation of people with locked-in syndrome.
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