Four years after Howard had his stroke, things have moved on a lot and in a very positive way!
After suffering a massive brain stem stroke in October 2011 at the age of 16, Howard was left with a condition known as Locked In Syndrome. Although Howard was completely paralyzed from his head downwards and unable to speak verbally, (could only communicate with eye movement and facial expressions) he still had full mental capacity, hence this was the most frustrating state to have been left with. The prognosis given was not good. However, Howard set out to prove everyone wrong.
With family support, Beyond Limits, and the huge kindness and generosity of others, Howard has finally moved away from hospitals and institutions into his own home in a location of his choice.
With Beyond Limits managing Howard’s service for him, and a lot of family pushing to enable him to be part of the new personal budget system, he now has his own Individual Health Budget, his own personal team to support him in his bid for independence. Howard fully participated in interviewing and selecting his own team, people who matched his personality, his likes and dislikes.
People from Howard’s local community raised enough money to purchase him his own specially adapted car (with personalised number plates!) which opened lots of new doors offering Howard the opportunity to get out and about when he chooses.
A trust for Howard
A Trust was set up by 3 people to support Howard on his journey, with a view to funding medical treatment that one day might enable doctors to “rewire his brain”. As time went on they decided, for now at least, they should focus on what Howard needs now to keep him well enough should such an opportunity arise.
Two members of the Trust actually purchased the house for Howard to rent from them, so he now has his own tenancy.
A Council grant was obtained to help pay for all the necessary adaptations to the property e.g. having a lift installed, doors widened and a purpose built wet room.
Local businesses and individuals gave their time to work on the adaptations for free, or donated things like, full double glazing for the property, reduced prices on furnishings. One of the Trust members even celebrated his birthday by insisting his friends do not bring presents for him, but instead bring money to put in the Trust for Howard! This money then enabled Howard to purchase furnishings of his choice for his new home.
Howard’s house has been fully adapted to fulfil his needs, with the use of specialist IT equipment supplied by http://www.possum.co.uk/ which allows Howard to be more in control of his environment.
Unable to move his arms, Howard has learnt to control his wheelchair using his cheek and a special mount and knob.
Fundraising enabled Howard to have his own Functional Electrical Stimulation (FES) bike (www.bit.ly/FES-cyclone) and he also uses FES equipment to stimulate his hands.
Fundraising coupled with Howard’s decision to use money from his Individual Health Budget meant he was able to have his own top of the range standing frame, as with time, Howard has now learnt to stand with support.
People’s hopes and dreams are so important, Howard and his family consider themselves very fortunate to have been able to receive so much help and support. At times it had all felt like an impossible dream, but here we are in 2015, nearly four years on and see what has been achieved.
Thank you to Beyond Limits www.beyondlimits-uk.org their bespoke package of support, for listening to Howard and supporting his choices, promoting his independence on his journey to fulfil those hopes and dreams.