Global Rare Disease Day.
Having a rare disease means different things to different people, obviously depending on the nature of the condition. Raising a child with a rare disease is immensely challenging for many reasons and I just feel like sharing a few thoughts about what it is like for us.
In the early years, having a medically fragile child was simply terrifying; each day was quite literally, a battle for survival with the medical professionals admitting that they had ever seen a child struggle as much as ours. Watching our baby struggle to thrive as the doctors failed to connect the pieces of the jigsaw to figure out the cause was a very frightening situation to find ourselves in.
Receiving our child's diagnosis of a rare disease was both heartbreaking and a relief. Heartbreaking because we finally knew that this condition is incurable and life-limiting; a relief as now we finally knew what we have to face. For us, knowing is far easier than not knowing.
Not only have we come to terms with our son's diagnosis, we embrace it. It is a huge part of who he is and what we have become as a family yet he is still a young boy and an individual with a point of view. We have become a family with a child with additional needs and all that that encompasses: frequent surgeries, procedures, hospital visits and therapies; support group meetings and school review meetings to name but a few of our extra parental responsibilities. We have had to rethink our short-term and long term plans, and discuss our family's mortality in a way that many others don't. We work hard now because we can; we save hard in case we have to give up work in the future to care for Marcus.
We don't know what level of independence our son will achieve. We don't know how long he will live. There, I've said it. I find those thoughts hard to deal with, like all parents do. But our son has congenital heart disease, cysts on his brain and a myriad of other things besides.
Above all, our son is a blessing and a gift. He has taught us more about life and ourselves than any book or qualification. He's taught us how to fight for what he needs, how to bring the best out in him and how to grasp every day and opportunity and make the bloody best of it. Most of all, he's taught us how to love ❤️
www.cfcsyndrome.org
