February 2016
We have been overwhelmed with the support we received at the inaugural
Mighty Matthew cycle last year. It meant so much to us have so many of our
family, friends and the community recognise our struggle. When you think of a
charity or fund raising you think of a happy ending , a cure , a solution. This does
not apply for Matthew! There is no cure, no solution, no therapy that will
instantly fix Matthew or alleviate the many issues that are associated with his
condition. Matt is now 17 and his life has become progressively more complex
and difficult in the last few years. He is a beautiful, physically healthy young man.
He is our Son, our first born and we love him dearly. However this does not take
away from the stark reality that his condition makes daily living extremely
challenging. Some mornings you wake up with the dread of the challenges Matt
and the family will meet through the day.
The funds raised have helped us to improve certain aspects of Matthew’s life and to help us a family. Firstly and most importantly, we have been able to access a reliable and qualified carer to bring Matthew on regular outings throughout the week outside of his normal school hours. This allows us to spend time with our other children and do normal daily things that other families would wish to do. It
also means that Matthew gets one on one time with a Carer dedicated entirely to his needs which otherwise would never be within our reach.
The Trust is a massive support to us and the many other initiatives that are in
the pipeline will help with Matthew’s care and quality of life and this means the
world to us.
Whilst this will help, our fears for Matthew’s future remain. At present we do not
know what care will be provided by the State when he turns 18. This is less than
11 months away! Our main objective from the Trust is to gain a Respite facility to
care for Matthew on a regular basis to allow our family to rest and recharge. We
feel that we will be better able to deal with the complex and demanding needs
that Matthew has but will also provide us with time to spend with our other
children and do some normal family activities that are impossible to even
consider while Matthew is at home.
Our ongoing appeal with the HSE will continue, to fight for the proper resources
for Matthew especially when he turns 18. We hope to get some positive
resolution on this but remain cautious having been repeatedly knocked back
over the past number of years.
Again we cannot express or gratitude enough to those who have made the
Mighty Matthew Trust possible, to those who have participated in the events and
fund raised to those who have contributed to help our son and us as a family.
Your continued generosity, commitment and support will make this journey we
are on less difficult.
Lesa & Kevin.