Tonight I had a board meeting, which is why it's late, late, oh so late now. I have found myself in the role of Vice-Chair at the Halton Down Syndrome Association, and I am oh so honoured to be there alongside a fabulous group of people.
Board meetings, if you've ever been to one, can be intense! I am literally exhausted afterwards, so I will attempt to keep this brief.
What is so great about being on the board is that we get to make decisions that impact people's lives who have Down syndrome, or a family member with Down syndrome, for the better.
Tonight, I am very proud of two very special decisions our board made, among many.
The first decision was in regards to a family in our association who has a 3 and a 1/2 year old with Leukaemia. What you may or may not know is there is a higher incidence of childhood cancer associated with Down syndrome (but then lower for other forms of cancer later in life - interesting). This family is driving to Sick Kids 5 days a week for intense treatment, and their child will be in intense therapy/recovery for the next 2 years of their life - minimum. I don't want to get into too many of the specifics to protect the privacy of the family, but as you can imagine, in the situation of having a child in hospital it puts a major strain on that family's lives - emotionally, financially and otherwise. One board member who is close to the family and had visited gave us an update on how they are holding up: not great. What brought me to tears was hearing about how their daughter could no longer walk. I couldn't help but think of Elyse, and how much of a struggle she is going to go through to get to the point of actually walking - to have that taken away - it's too much to bear. All of it is too much for one family to take on. Sitting around the board room table with me were two other parents whose children are cancer survivors, and one of the children - a grown man now - was right there in the room with us. There is hope, so much hope. My heart goes out to them.
I'm proud to say, through our Angel Fund that has officially now been created, HDSA is going to make a special gift to support this family, as they do from time to time, for families who are placed in exceedingly difficult situations.
The second decision I'm proud to support comes from a story that brings me comfort. Two members of the Halton community who had Down syndrome, and were well known and respected, recently passed away at 61 and 63 years of age. Apparently, it was a little known fact that the couple were married, and they lived a very happy life together. They died only weeks apart from each other - as though one couldn't live without the other. As an association, to honour the memory of this reputable couple with Down syndrome, we are making a donation in their honour to their designated charity: I believe it was Community Services of North Halton. I'm very pleased we are doing so.
As a board, there are some tough decisions to make, and some not so tough decisions to make. These two were no brainers.
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