A dear friend of mine, a wonderful mother, and an all around good person, has recently received some devastating news. After seeking medical care regarding her 7 year old son, Harrison, regarding his gross motor delays, her family was presented with the most unfathomable news: Harrison has a form of Muscular Dystrophy (they are still awaiting official genetic results but their pediatrician feels strongly that it is likely a mild form of Duchenne's).
Regardless of the type it means a progressive loss of mobility over the coming years, something he has already begun to experience with an increasing difficulty with climbing stairs and getting up from the floor, in addition to an overall limit to his physical stamina. So now, while he still has enough mobility to truly enjoy the magical kingdom, I want to help send them there! Because aside from emotional support, it is the very least any of us could do when a family in our community is faced with news like this. Whether you want to support the trip itself, or help them save towards the extensive medical costs awaiting them in the future, either way it will be a huge help to the family.
Not only is Joanna incredibly hilarious, but she is a fantastic writer so the situation is best explained in her own words, in a post borrowed from her social media account.
"After an emotionally exhausting couple of weeks I am finally in the right head space to share this post with you all. There are lots of people on here who I don't see often, or maybe even ever, but that I know would want to be aware of what has been happening. This is a difficult situation, even an uncomfortable one, but one we are being forced to face as a family, and one that will change our journey in this life in many ways.
Last week we took Harrison for a doctors appointment to address some delays with his gross motor skills. He's always been a little slower, more awkward, less coordinated than his peers. We have forever chalked it up to the natural differences that occur within kids since he always seemed to catch up eventually, but this school year there has been a noticeable gap and his peers seem to now be pulling way ahead of him. We assumed, along with his teachers, that he could use some occupational therapy to get him caught up.
However, what actually happened was that Harrison was diagnosed with a form of Muscular Dystrophy, a degenerative muscle wasting condition that, depending on the type, could result in him being wheelchair dependent as early as age 12. It will also likely significantly reduce his life span depending on the type and how it effects his heart and lungs. Right now we are waiting on genetic tests to come back which will give us a clearer picture of what we can expect and what kind of drug therapies may be available to slow the progression. Regardless, each case is unique, and there can be huge variances in how quickly children become disabled and how it effects then overall, so we have to accept the worst possibility while still hoping for the best.
Obviously this comes a massive shock to us all, we all knew he wasn't the most athletic or agile child, but we didn't realize just how earth shattering and serious the situation was. Nobody did. I don't think anything will ever floor me again in this life the way this has. I will undoubtedly be writing a lot about this experience, it's what I do, but all I can say for now is that up until now I definitely wasted a lot of time worrying about all the wrong things. This insanely terrifying thing has been happening right under my nose for his entire life and I didn't even know it. I have been anxious and afraid about hurt feelings, mental health, injuries, and a million other imagined things and suddenly I have been caught off guard by something not even on my radar. Like at all.
Harrison doesn't know much other than that he really hates bloodwork and that he has an illness that makes his muscles weaker than other kids. Why worry a kid who is no different than he was when we started out last week? Until we know more and until his mobility changes significantly (and even after it does), we intend to live this life we've been given to the fullest, with as much joy and humour as humanly possible. Plans are starting for a spring time trip to California (when shit hits the fan you up and go to Disneyland, amiright?) and we're going to take advantage of the time we have now. It's more apparent than ever that we aren't promised a good tomorrow, or a tomorrow at all, and we won't take that for granted anymore.
So. There it is friends. The biggest fucking shock/heartbreak/life changer that there ever was. But it was in Harrison from the moment he came into this world, it is part of what makes him who he is, we love the ever living shit out of him, and we wouldn't dream of another little person to share our lives with. We will face it as a family, we will be stronger because of it, and we will do this thing called life together, even if it won't look like what we might have once imagined."
Micheal, Joanna, Harrison and Iris deserve this. They deserve the opportunity to create as many amazing, magical memories as possible while his mobility and childhood are at their very best. So let's rally guys. Let's help send them to Disney Land.