On the last day of February each year, it is Rare Disease Day. I never knew of this day before 2011. I stumbled upon it, when our family dynamic changed, and our son was diagnosed with a rare disease – an intractable form of epilepsy – HHE Syndrome.
Over the past 3 years or so, we have met others, through the internet, who also have a child with the condition. We now have a support group for us – online, as we are all spread out over the globe.
Mikey has an epilepsy condition and a form of cerebral palsy. Even though these 2 conditions separately are commonly known, the syndrome itself is rare and brings a whole other host of issues, due to the complicated nature of the syndrome.
Some friends we have made have different conditions as well as the HHE. All our kids may have HHE Syndrome but they are each unique in the way that it has affected them.
Rare Disease Day is a day for awareness of those living with rare diseases. There are many who have limited access to treatments due to where they live, or lack of access to the right resources.
It is also a day to celebrate and remember the lives that have fought rare disease but are no longer with us. Cheryl and Tom sadly lost their little girl to HHE Syndrome and have raised much awareness for #FlyHighEdie in their homeland of Scotland. We will always remember those that have fought before us and we will keep living to make them proud, as they watch on.
The only way we can support each other is to stick together, through thick and thin. Raising awareness, supporting the vulnerable in our community – not only the children but their siblings and their families. Supporting one another is where it is at.
On this #rarediseaseday2017 we wish you love and strength.
Team Wilton xx