One of the big things to have come from Matthew’s diagnosis of duplication 15q syndrome is the support network of friends from around the country who offer sage advice on the condition and life as parent with a child with additional needs or strength and encouragement when times are tough.
One such friend from within the group recently told us about a charity who she described as amazing and incredibly easy to deal with. Her daughter, like Matthew has a similar fearless character and knows no danger and like us had been through the same quandary as we were going through with regards sleeping arrangements.
The sleep situation at home had been sorted, a long and arduous battle with the local authority had seen our case acknowledged and approved for a specialist bed that would keep Matthew safe at night for years to come and allow us to relax and sleep soundly at night knowing this.
It was the time away from home where the sleep now became an issue, holidays abroad had become a near impossibility. The thought of putting Matthew to sleep in a bed in an unfamiliar environment where he could wander the room whilst we slept made the heart skip a beat. When we then considered the hard stone floors, a door to a balcony or one leading to a swimming pool and Matthew’s obsession with water made it an immediate no.
When we simplified things and considering time away from home at relatives, visiting Debbie’s parents for example in the Lake District, a regular trip away from home that we take for granted in the past such is its simplicity. However, Matthew was now too big for the travel cot we had been reliant on to keep him safe. This visit was now too at risk, a regular break which we looked forward to, yet with nowhere safe for Matthew to sleep made it increasingly difficult to consider going forward.
It was not just us and the kids it was valuable to, Matthew loves the stimulation and freedom the outdoors and nature the Lake District provides, the girls love spending time with the grandparents and they cherish the time with the kids and being able to spoil them as all grandparents do.
To see this valuable family time at risk of being taken away by something so simple as a bed was difficult to accept, yet it was hard to find a way around.
So, at a crossroads at something of a catch 22 situation, holidays were impossible as we did not have a bed, but the bed was impossible until we saved, which made a holiday impossible because we would need to finance a bed first. We could send the girls to the grandparents alone, but that denied Matthew and us of a break too and there are three grandchildren not two, each one equally important, so that was not an option either. It was one enormous, yet frustratingly simple barrier to our everyday life.
Around this time of contemplation, the friend from the support group mentioned a charity who at that time we unaware of, a charity called “Dreams Come True”.
Approaching a charity was something that we had never really considered, we believed that there was always someone more deserving out there, that we had no right to ask or call it pride that prevented us from asking for help, we simply preferred to just do it ourselves.
However, one day at a around the same time while attending a disability equipment expo in Manchester an exhibitor approached us to find out a little bit about Matthew and his needs. We discussed our reticence to ask for help where he stopped us mid flow and suggested that we took a step back and looked again, the help was not for us it was for Matthew.
Not only that, he explained how a panel would usually consider a case, that each case is thoroughly assessed to ensure the help goes to those who need it, someone who was impartial and would look at the facts before them.
So, we applied to Dreams Come True, buoyed by the simplicity of the process, an online form to outline Matthew’s needs and “dream”, some supporting notes from our GP and a few other documents, we then waited with anticipation.
A short while later we received a letter back confirming they would be delighted to fulfil Matthew’s dream, we felt a sense of relief, excitement and gratitude. This barrier that stood in the way of our family routine was about to be broken. Such was the simplicity of Matthew’s dream we were asked to feature as part of a wider appeal, something which was rather alien to us at first, but something that was handled with professionalism and compassion.
Seeing the work that Dream Come True do and the difference they make to children who are affected by life changing circumstances, illness and disability was truly inspiring and I decided I would give some time back to them as a volunteer. Meeting the team since has strengthened this opinion of this fabulous organisation, and I am relishing getting involved in future projects.
Put simply, their philanthropic endeavours will change our lives and allow us to do the simple things we all take for granted. Simple things that without their help would quickly become impossible.
Dreams are typically regarded as fantasy, make believe, an escape from reality or something just beyond reach. When actually, sometimes they are in fact about wanting to achieve normality (whatever that is), to do the ordinary and just do the things you always did, Dreams Come True are helping us to achieve this and for that we are so very very thankful.