Crossing the Pond
'History will judge us by the difference we make in the everyday lives of children'.
I attended an event this past weekend where it hit home just how much Oliver, and others like him, inspire me to want to be that difference maker.
The event was the Lily Foundation annual Family Weekend. I was blown away by the people I met and the stories I heard. It motivated me to share my experiences, starting with this blog update on all things Oli.
It's been close to a year since I last wrote on here. An actual YEAR. That in itself is a wonderful thing. It means a whole year of life, for which we don't take for granted, creating precious memories with Oliver & Ava. A lot has changed in Oli's world since my last post. I thought I'd provide you with a brief summary:
- Oli turned one. He celebrated, in the style of his dad, by eating too much cake and passing out half way through the party, while all the guests were still there!
- Oli showed just how Incredible he is on halloween.
- The year hasn't panned out quite as straight forward as a downhill ski. More of a slalom, with unpredictable obstacles placed in our way when we least expected. Even when all seems rosy, we're never quite out of the woods.
In early November the four of us all picked up common colds. It took a day or two for Kayli, Ava & I to shake it. It hit Oliver a lot harder. His body has to work overtime to fight off a virus and he doesn't quite have the energy or strength to do this effectively. The 'rhino virus' we all shared, left him in PICU, able to breathe only with the help of a ventilator. We spent 2 nights in hospital praying that we weren't about to see another 'crisis'.
Thankfully he rebounded incredibly and was back to his smiling self just a few days later.
- The mounting medical bills and logistical nightmare that is navigating the choppy waters of the US healthcare & insurance arena, lead to Kayli & I making a life changing decision. We decided to take full advantage of Oliver & Ava's dual nationality, get their UK passports & MAKE THE MOVE ACROSS THE ATLANTIC!
- Oli braved his first British winter (which was surprisingly mild, relatively speaking) without getting sick. He made a few new friends in the process...
- He recently received a few shiny new toys, courtesy of the NHS. He absolutely loves his new 'stander'. Where in the past the majority of his day, when not being held in our arms, was spent rolling around on his mat or sat in his chair at ground level, he is now able to see life, and most importantly his sister, from a whole new perspective. It makes me so happy to see the enjoyment he gets from it. In case the photo isn't clear, his stander is a contraption that we strap him into and gives him full support in an upright position, whilst encouraging him to bear weight on his feet for the first time. His muscle weakness means that at present he can roll back and forth, hold his head up, get his feet up under his bum to shift along a bit, but he's not able to crawl, or even stand, unsupported.
There are constant reminders each day of the things Oli's condition limit him from doing. To see him prospering in certain areas is a big win. In my last post almost a year ago I touched on the seizure activity that Oli was beginning to experience. His doctors started him on a dose of Kepra medication. I'm pleased to report that worked fully as intended and we haven't seen any seizure like activity since the back end of last year.
Not only that, but Oliver has yet to be admitted to hospital since we've been over here, touch wood, we have only had to go to the hospital for routine check ups. A good sign that things are under control and ticking along quite nicely, at least for the time being.
It's important to keep smiling through your darkest days, the sun will eventually appear.
With a sense of normality and routine beginning to appear in our new life in England, we jumped on the opportunity to go away on holiday, the week before last. The four of us were joined by family from both sides for a very relaxing and fun filled jaunt to Center Parcs @ Sherwood Forest. It was paid for by the generous people at the Lily Foundation.
The Lily Foundation is a UK charity dedicated to fighting mitochondrial disease.
As a quick recap; Oliver was born with a rare genetic defect called Leigh’s Syndrome. Twenty years or so ago it was unheard of. It’s one of several cruel health problems classified as a ‘mitochondrial disease’ that limits the energy supply to your vital organs. The science and knowledge base within the medical field is still very limited when it comes to mitochondrial diseases, because they are all so new and complex to diagnose. Each can present itself very differently and look, at first, like a host of other health issues.
The charity have done a fantastic job of supporting families affected by the condition and bringing them together in a tight knit community, who support each other. It's a club you don't want to be apart of, but once you're a member it's like family.
We're fortunate enough to have supportive friends & family around us but many parents and families within the mitochondrial disease community suffer from social isolation, a certain stigma surrounds them/their children.
The event brought me in contact with parents who have lost not just one, but multiple children to mitochondrial disease, with parents who have had multiple children and then find out they all possess a faulty gene that will undoubtedly lead to various health problems and potentially death, with parents who have the disease themselves, which they perhaps didn't know existed until it started to present itself in later life.
It's basically one big bitch of a condition.
Many, like us, had no previous family health problems, no idea this would happen to their child, until a gene mutation at conception changes everything, and your whole world is thrown upside down.
Most of the kids at the event have serious debilitations and limited life expectancy, but they’re some of the happiest and most endearing kids I’ve ever been around.
Seeing the fight they go through, as up close and personal as I do, inspires me to do all I can help in what ever way I possibly can. I came away from the weekend with a determination to do more. To stand up and give a voice to the voiceless. To educate & inform. To raise more money for The Lily Foundation and the mitochondrial disease field as a whole. I invite as many of you as possible to join me in doing so.
I leave you with a few of Oliver's holiday snaps.
-Brett
Such a good update. Thank you for taking the time to inform us all.
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