My son Henry is our first born, next to his beautiful and helpful 4 year old sister Rosemary. Henry is 5 years old (about to be 6) and he’s a happy, thoughtful, wonderful, kind, and loving little boy. He is very curious, imaginative, and funny. Every day he teaches me how to live, his presence and smile are constant reminders of how amazing it is to be alive and breathing. His absolute pure humanity keeps our family going in the face of his diagnosis where we find ourselves in an almost consistent state of mourning of the life he won’t experience, instead helping us to rejoice in the life that he will.
He always makes us laugh, and is always ensuring everyone is okay, offering us hugs and kisses whenever he senses something might be wrong. He loves all things cars and trucks. When we’re not drawing and coloring pictures of vehicles, playing hide and seek or snakes and ladders, we construct parking lots and traffic jams with his car collection. He’s so active, and engaged, just like any other boy his age. It goes without saying that I love both of my children more than anything on this earth, and would do anything for them.
We received a speculative PMD diagnosis in January of 2015. Something that caused my whole world to collapse. So much so, my inability to cope more or less ended up in the loss of my job a few months later. I felt helpless, hopeless, weak, and broken. Feelings I still battle with each passing day, while simultaneously learning to overcome them. I realized one of my only options was to become stronger for him. He’s inspired me to quit smoking, lose weight, eat better, and implement an exercise routine. I know that he needs me, and will continue to do so for many years to come, so I’ve decided my best course of action is to stay strong for him and our family.
His diagnosis of PMLD was confirmed later that year in October. I had just started a new job at that time, so things were a little unstable and unsure for a little while. With the mentality that the only way out is through, through the crying, the sleeplessness, and anxiety we managed to get our lives back on track. Ever since my wife Heather and I have been working hard to support each other, and our beautiful children. Maintaining the balance between the order of a functioning household, and the chaos of his unknown future has been our top priority. I have the strongest wife in the world, and if she wasn’t here carrying this load I’m not sure where we would be. Through her diligence and planning (I give her full credit for this) we’ve managed to attend countless doctor appointments and therapy sessions, while keeping Henry in the proper care for his needs. We’ve even sold the house we lived in, designed and build a new one to cater to the needs of our family. All of which have been driven by Heather.
It has been tough, but we have fought extremely hard to get where we are now, and there is no end in sight. We have stayed strong, and know we have no choice but to continue this path as a team, keeping one another in check. I’m sure a lot of that sounds cliché and annoying to most people but having said that the system we’ve managed to cobble together appears to be working. This isn’t to say we don’t have times we wish for another shoulder to cry on, or set of hands around the house, as we do get overwhelmed quite often.
The genetic department of our local children’s hospital offered to track the origin of the PMLD gene. We did follow up, and managed to find out. More out of curiosity than anything else. Any member of our family that could be affected was notified, and we’ve more or less left it there. This particular disease is such an anomaly, and as far as I know in order for it to come to fruition, the genetic mutation should have affected the both of us, however that wasn’t the case. It just so happened to be a complete act of God, and totally out of our control. I am of the opinion that a person should not worry about these sorts of things when starting a family, especially for something that’s this low risk.
I reached out to the ULF sometime during the summer of 2015. A man supplied me with a lot of very useful information. However, the more I read the worse my coping became. It sounds selfish to say, and I speak for myself, in that I found it best to deal with any issues as they arose as opposed to taking on the entire weight in an attempt to “be prepared”. This is partially due to my neurotic personality, but I do believe that taking our lives together one day at a time has been the most effective way to tackle such a complicated issue. My wife however is far more engaged, and I sometimes see this take its toll on her, I do my best to keep her grounded. If the time comes we can no longer bear the weight of the situation, and need to reach out for further consultation and help, I am beyond grateful that an organization like the ULF exists. In the meantime, we have heavily relied on our health insurance and tax benefits for the financial aid required to pay for the AFOs, walkers, wheelchairs, and a variety of therapies for Henry.
Because I spend each and every day with Henry, my ability to take notice of any major change in the progression of his disease is negligible. To me he’s the same wonderful and happy boy who has trouble walking now as he did at 2 years old. His vision has always been affected by the nystagmus, but it’s hard for me to tell if it’s getting worse or staying the course. Most recently, one of his neurologists made mention the joint movement of his feet and ankles had worsened due to the spasticity, so we are going to give AFOs another shot. He wore AFOs when he was first diagnosed, but the doctor’s quickly realized there wasn’t any benefit at that time, and recommended we discontinue their use. Otherwise he still uses his walker to get around. He does tucker out a little quicker than most kids, and while this has always been the case he’s getting bigger now, so we plan to have a wheelchair on hand to help get around during those times. Otherwise he’s the same child, the same undeniable light of my life who is stronger than I could ever hope to be.
Our family has not participated in or organized any official awareness activities for Leukodystrophy as of yet. However, during a recent vacation back to Newfoundland, Canada where my wife and I are from, we managed to coordinate a group photo with my family while wearing ULF t-shirts. This is the first time we’ve been able to actually engage in any kind of activism, but it certainly won’t be the last. I hate to make excuses, but we still find ourselves amidst a delicate balance. We definitely look forward to making this sort of thing a normal part of our lives as we go forward.
I hope by sharing his story, that Henry’s undeniable spirit in the face of his adversity can be a shining example not only to those of us experiencing the unknowns of a child’s illness, but to anyone having a hard time seeing a light at the end of the tunnel. When you’re able to face something like this, stare it straight in the eye, you can diminish its negativity, and normalize it into your everyday life becoming stronger in the process. Henry isn’t defined by his disability, but by his loving personality and voice, nothing will ever change that. Henry is a beautiful representation of the unquenchable spirit within each one of us, it’s this defining human trait that allows us accept our fragility, something that’s seemingly lost in the fray of the digital white noise.
If this experience has taught me anything, is that part of being alive is willingly accepting the uncertainty and the inevitable periods of tragedy. It is simply up to us whether or not we will allow the tragedy to define our fleeting time here, or if we can find the strength to reduce the suffering that comes with it. Each and every one of us is stronger than we could ever imagine, and this is something we need to remind ourselves on a daily basis. One gaze into Henry’s eyes is all I’ll ever need.
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