Joseph Matthew Nolan
Thank you for taking the time to view this page which has been created in memory of my son, Joseph, or Joe as he was known.
Joe was born on 11 September 1999 and lived with Dravet syndrome. He was only diagnosed with Dravet Syndrome in 2012 and even then tested negative for the SCN1A gene mutation, but received a clinical diagnosis.
Joe went to sleep as normal on the evening of Tuesday 26 November 2013. “Wake up in the morning & find Daddy”, he said, as he always did when I kissed him goodnight and tucked him in. But he never came to find me on the morning of 27 November 2013 as he normally did and despite our best efforts when we found him, he never woke up. Our beautiful big eyed boy was taken from us prematurely due to SUDEP aged 14 years, 2 months and 16 days old.
Joe was described as having special needs, but to us he was just special: a very special boy. Such a gorgeous baby, with lovely curly hair, massive eyes and amazingly long eyelashes and he grew up into a beautiful big boy, so handsome. He was 5 foot 8 ½ inches tall; with size 12 smelly feet which he insisted we all sniff most days.
He was a big lad, but so vulnerable and clumsy. Like Rex the dinosaur from Toy Story, one of his favourite films. But he was surprisingly agile too. Joe was the original, amazing, autistic escape artist and he could spot an unlocked door, window or gate a mile off so you had to be on your guard.
He was typically autistic in many ways but he wasn’t insular. Far from it, he was so loving and affectionate. Joe adored his family and we adored him. We all benefited from Joe’s affection, with “big hugs” and “big squeezes”. Lots of kisses too, all specifically named by Joe, we enjoyed “normal kisses”, “noisy kisses” and “kisses with arms”, or if we were really lucky a mixture of all three.
Joe loved all of his wider family too and was always excited to greet family visitors. It sounds like a cliché, but Joe literally did make friends and build strong relationships wherever he went. He loved and was loved by neighbours, by the teaching staff, care staff and transport staff who looked after him over the years. His school and youth club friends and basically most people he ever met. He was such a big character with such a big smile and these qualities combined with his innocence and affable nature made it impossible not to love him.
He was very autistic in other ways. He was obsessional and he always had to know what was happening next. We spent hours and hours every day queuing him in for that day and the days ahead. “What’s for dinner tomorrow?” he would ask, usually before we had even started today’s dinner.
He put up with so much in his life, in and out of hospitals. But he was so brave and he just got on with it. We are so proud of him, so proud to say he is our Son and our Brother. And despite all the challenges he faced he embraced life and with his gorgeous toothy smile and flappy arms we knew when he was happy. And he was a happy boy.
He was a fighter too; he displayed such determination, overcame the odds and defied so many of the expert’s predictions for him over the years. There were so many times when we could have lost him, perhaps even should have lost him, but he fought through. He came through horrendous seizures, defied all odds to come out of coma’s only to greet us with his big, beautiful smile and flappy arms. He suffered a cardiac arrest in August 2013, we really thought we had lost him then, but the paramedics managed to resuscitate him at the 5th attempt and he made an amazing recovery which saw him return to his normal self within a month and even return to school. He was a walking miracle, our big, strong, brave boy and his ability to beat the odds on so many occasions made us feel he was indestructible.
He surpassed expectations in other areas of his life too. He learned how to use the toilet, went from giant nappies to proper big boys pants. Sure, he had accidents sometimes, but that was okay. There was also actually a time when Joe could only say a few words. But with the hard work and music therapy at his special school he came on in leaps and bounds and in later years he spoke constantly, quickly and very, very loudly from early morning, noon to night. It is so, so quiet without him now.
Joe was such a character and had such enthusiasm for the things he loved in life and was very active.
He loved his food and quickly overcame the food fads from his toddler years and would eat virtually anything, with chilli con carne, curry, party food, sausages, sausage rolls and cheese & onion crisps being particular favourites. He would always ask for seconds at dinner time, usually before he had started eating his first plate. He was funny at a buffet too, he didn’t grasp the concept of it; he would just pull up his chair at the buffet table and devour whatever platter of food happened to be in front of him. Brilliant.
And his ultimate passion in life was lorries. He loved lorries, absolutely loved them. He would pour over his lorry magazines, lorry books and YouTube lorries on his iPad for hours. He loved going to the library too in search of new lorry books. He loved looking at lorries on the motorway too and we would often be found ‘lorry spotting’ on random motorway bridges or at Liverpool Docks.
But he was active too, an outdoors man, with endless walks. He loved woodland walks and we spent lots of holidays in Wales, Scotland and the Lake District and over the years we must have walked every canal path, bridle path and field near our home.
Quite incredibly he was brilliant at riding a two wheeled bike too, no stabilizers required. He just picked up his older Brother’s bike one day and to everybody’s astonishment he rode off on it. He had amazing balance, not so good at braking. He was a great swimmer too, he used to swim at speed and we spent many hours with him, or rather pursuing him, at swimming pools or at Center Parcs. I even had to retrieve him from the freezing cold River Mersey one cold October following an impromptu dip when we had been walking on the beach.
I mentioned Joe having music therapy when he was younger to assist his speech and I don’t know if it was due to this, but he loved music. He knew the lyrics to so many songs and he made his own up to a few as well which used to make us laugh. He would sing songs loudly and dance unreservedly with his head going from side to side.
He was obsessed with all things Postman Pat, with an extensive video, then dvd library and we all watched them so many times during the last 14 years that we felt that we knew all the characters personally. He loved his postman pat duvet set and books.
Joe had such a great sense of humour too; he understood when to take the mick and his comic timing used to have us in stitches. He was a world class mimic too and had lots of voices and noises in his repertoire. Every day since his passing I have heard the call of a carrion crow in our garden and it makes me stop and smile, this was a noise Joe had perfected and so I am now convinced this is Joe letting me know he is okay. I hope so anyway.
It hasn’t been all plain sailing. Joe was challenging and at times hard work, but we adored him and he brought so much joy and laughter that it didn’t matter. Even on the toughest of days he would always do something to make us laugh, hug and kiss him.
We have so many happy memories of our time with Joe and lots of funny stories from split swimming shorts at a packed Center Parcs, to the tell-tale black marks on his little nose where he’d been sniffing the cars tyres, or his first trip to the dentist when he bit the head of the silly dentists mirror. He was a big character our Joe-Joe and his passing has left such a huge hole in our lives, we miss him more than any words can ever convey.
For the years Joe has not been in our lives, we have lived in his. We have loved him, nurtured him and built our entire worlds around what worked for him. We have given him our all. So his passing is all the more difficult as Joe’s world has been our normal. We are struggling to continue without him. But we feel absolutely blessed to have shared this time with Joe and he has made us all better people. We cherished Joe for who he was in life and we will cherish his memory forever.
It is in his memory that we are now trying to raise awareness and funds to assist research into Dravet Syndrome.
No parent should have to face losing their child. No words can describe the devastation of such a horrendous event. With this in mind we shall continue to honour Joe’s memory and continue to support Dravet Syndrome UK in the hope that one day a real breakthrough can be made and the risk of death due to this condition can be eradicated forever.
