Don’t lose your head

When our first babies reached a year old, my friends and I cheerily raised a drink or two to celebrate having kept alive our firstborns for an entire year. Giving birth to, feeding and growing a whole actual human seemed like such a momentous achievement and yet we were able to nonchalantly joke about keeping our offspring alive because we had never yet faced a situation where their lives were ever remotely at risk. We just had to, you know, feed them and love them and stuff.

Even with Orange, we’ve been extremely lucky that he was born healthy and in the first 18 months of his life, faced no immediately threatening health issues, despite his developmental complexities. Of course he threw us a major curveball in the autumn of 2012, when we were just days away from relocating to Cornwall, in that he developed a seizure disorder and gave us the fright of our lives by having six seizures in 24 hours that each caused him to stop breathing.

Our experiences of the NHS have shown us that there isn’t much that can fluster a High Dependency Unit paediatric nurse, but there were several moments during that hospital stay when we were not the only people in the room that had our hearts in our mouths wondering if our boy would ever take another breath.

But he did.

Mr K wrote a guest post for the blog at the time that said everything I was too numb to articulate.

It was the greatest fear I have ever felt and I never wanted to step inside that house or that hospital again. Of course we didn’t have to, for we soon left it all behind to start a new life that represented hope, serenity and a happier future. An escape.

Several days and one extremely nervous journey down the A303 later, we had left well behind us the memories of our boy, blue and lifeless on the kitchen table, the fluorescent hustle of paramedics, the sterility and freneticism of the resus unit, and the deep, deep fear of losing our boy to a type of epileptic seizure which not one specialist could accurately identify.

With a little trepidation, and a lot of hope, we settled into our new lives knowing that it was likely Orange would face these seizures again, but with every day, week and month that ticked by, we slipped further and further from a paralysing state of high alert to a more relaxed way of being.

We worried a little less about who we left Orange with. We allowed ourselves to be excited about him starting nursery. Even letting the telly babysit him while I went to the loo or made a cup of tea became a possibility again. We slept a little more, instead of lying with one ear attached to the baby monitor, tuned in to every rise and fall of his breathing.

With only a few absence seizures here and there, and one small seizure last summer with a slightly juddery but well oxygenated and still breathing boy, his epilepsy was well controlled. We felt confident we knew what we were doing, and I didn’t hold my breath every time Mr K travelled for work, wondering if now would be the time Orange would throw us a big one.

But last week, he did.

With Mr K in Dallas, I was on bedtime duty for the fourth night in a row, and in major need of a gin and tonic. Orange, home early from nursery with a fever, was in bed. Just Beep to contend with. At last, she was settled. And then a little voice piped up.

“Mummy, Orange’s breathing is giving me nightmares. He sounds like a monster.”

I listened at the door.

“He’s just snoring Beep, get back into bed and I’ll go and tuck him in.”

As I opened the door and unlatched his bed, the ‘monster breathing’ stopped. I raised the blanket to tuck him in. Pulling it over his little body I watched for the rise and fall of his chest before closing his bed and saying goodnight. Only that rise never came.

Lifting him from his bed, his stillness crushing me cold, I knew we were here now. This was it. It was a bad one. My head torn between fear for my boy’s life and sadness for my little girl that here she was again, watching her brother clinging on to life.

“He died, but he’s ok now…” Her three year old words echoed in my heart as I dialled 999 and held his airway open.

Desperately following the life support instructions of the emergency operator, I gave him rescue breaths, Beep watching his chest and his colour all the time.

“He’s breathing in mummy. He’s breathing in. But he’s grey mummy, he’s still grey. Orange, you’re going to be ok, the ambulance is coming. He’s breathing mummy, he’s breathing.”

Orange took tight, laboured breaths as the seizure constricted his chest. In, and out. In, but not out. A pause. In again, in again. And out. A pause too long. More rescue breaths.

As the ambulance arrived, my little six year old Beep took charge, running to open the door and directing the crew up to where we were. Bravely, she watched as Orange was intubated on the landing floor. Calmly, she cuddled a favourite toy and went without a tear or a fuss to sleep with our neighbours as I frantically grabbed medication, a hoodie, shorts and a phone charger and leapt into the ambulance with Orange, tubed and bagged and still in the grips of the longest seizure he had ever had.

His pyjamas cut, wires all over his body, oxygen mask over his little face, we raced through the dusky lanes to the whine of sirens and the flash of blue lights. Rescue medication given. But still no change in him. Holding on to the inside of the vehicle as we sped up and down through the windy Cornish countryside, I watched Orange, rigid and fighting for breath. And I lost hope. Gave in to fear.

Is this how it’s going to happen? With Mr K abroad and Beep with no family to comfort her? It’s been 30 minutes and he is still unconscious and struggling to breathe. We’re going to lose him, right here on the A38 in the back of an ambulance, aren’t we?

I wonder when to call Mr K. If we’re losing him now I don’t want to go through this alone. I text him.

In an ambulance. Orange not breathing.”

A second dose of diazepam. I watch the screen as his oxygen sats hover around 50.

A Texas number flashes up on my phone. But I don’t know what to say. Get home? But how? Your son might not make it? But maybe he will? And then I’ve created fear where none belonged.

But then the sats were creeping up. Up and up, 60, 65, 72, 88. The heavy silence in the ambulance was broken by the paramedics.

“He’s going to be alright, he’s doing alright now, he’s doing ok. He is, he really is. Go on, tell his dad he’s going to be ok!”

As we arrived at resus, a now distressed and angry Orange was wrapped in a blanket and carried gently into the hospital. Wired up to monitors, and soon falling into a post seizure unconsciousness, Orange let his exhausted little body rest and I completely fell apart in the arms of my mum who was waiting there for us, not knowing if he would arrive alive or dead.

We watched and waited for Orange to regain consciousness. We watched and waited for any sign of another seizure, expecting it to happen as it had in resus three years before. And again, and again on the ward.

But he surprised us. History did not repeat itself.

In fact, by midnight, riding up to the High Dependency ward he sat up on his trolley and had a good giggle about the fact he was naked in the hospital in the middle of the night.

We were looked after wonderfully on the ward. After a moment of black humour shared with friends about the prospect of a night upright in a hospital chair, a kind nurse brought me an incredible recliner and a pillow. Mum brought me an enormous bag of snacks and a duvet, and some of the essential items I’d forgone for shorts and a winter hoodie in my panic. And the next day, kind and wonderful friends brought in breakfast, coffee, books, toys and much needed hugs.

Our wonderful village and lovely friends, and mum, supported us and held us up when we needed it most.

I thank you all so much everyone who looked out for us, looked after Beep, visited, messaged and called Mr K to make sure he was ok too. I hope we can return these kindnesses in the future.

So now we are home, the adrenaline has subsided, and I am trying not to lose my head. We can’t run away from the fear this time. I can’t leave 250 miles behind me the landing where I kept my son alive while waiting for an ambulance. And I know it probably won’t be the last time I have to do so.

This time we have to face it.

Feel it.

Learn to live with it.

And not be paralysed with the fear of what may come. We must fill our heads and hearts with new dreams and new hopes instead.

 

Weeks like this

I’m often asked what it feels like to have no diagnosis for Orange’s condition. How do you stay so positive? Aren’t you afraid? Doesn’t it completely mess with your head not knowing?

The truth is, that carrying around such big unanswered questions would be utterly paralysing if we let them take centre stage in our lives for too long. There are no answers and we have to carry on living our lives in acceptance of that, while still trying to do the very best we can for Orange.

It’s a fact that life does not stop to make way for finding answers, however much we might think we want or need them. So if we were to give in to fear, and let our heads run away with what being undiagnosed might mean, to stay in that dark place we dwelled in the early months of Orange’s life when we would have done anything to get a diagnosis, it would be all consuming.

Life would pass on by without us truly taking part.

When the months of waiting for a diagnosis give in to years, you have to find a way to compartmentalise the uncertainty and step back into the swing of life.

So we put our biggest fears to one side and get on with living the best life we can live. Enjoying the company of people we love, following our dreams and ambitions, and giving our children as many opportunities as we can for a happy life.

I am so grateful to have moved on from the days when all I could think about was finding a diagnosis. Most days, my head is full of pretty common-or-garden things. What to do at the weekend, wondering why am I vacuuming cat hair for the thousandth time this week, keeping up with work and the typical demands of family life.

But there are some weeks when the world forces me to fully square up to the very worst of those tucked-away fears. This last week was one of those.

It has always been a possibility that Orange’s difficulties are caused by a metabolic disorder of some kind. An ‘inborn error of metabolism’ that causes developmental delay and health difficulties. Many of these are regressive conditions, with short life expectancy. While his continued physical growth and capacity for learning would suggest such conditions are unlikely, none of them have yet been ruled out in the search for a diagnosis for Orange.

On Wednesday, we saw a metabolic consultant for the first time. Until now, I’ve been able to neatly parcel away my fears (and greatly detailed and probably unnecessary knowledge thanks to google) about metabolic disorders, but on Wednesday there they were, laid bare on the table before me.

The consultant was kind. Reassuring. Sweet with Orange as she examined every millimetre of his being. She took blood. A huge amount of blood from his (somewhat unwilling) little hand. Blood that was quickly and deftly portioned out into tens of little vials, to be whisked off to labs all over the UK and beyond. The consultant could not tell me the full list of conditions these tests will either rule out or identify because it is simply too long to digest. The tests will, over the next six months or so, look for small differences in Orange’s blood and amino acids make up, that might or might not lead us towards a diagnosis.

In that moment I was reminded, that while the boy sat before me is a big, healthy, happy, cheeky, growing young lad, we still have absolutely no idea what the future holds. Or how long that future might be.

And I had carried with me into that moment the desperate sadness of another family whose little boy’s future had been taken away. A letter home from school. Opened, hastily, in a snatched moment of downtime in the paediatric ward waiting room. One of Orange’s little school friends. A dear little boy, who has passed away. In that letter, the full weight of sadness in the school community was palpable.

Without doubt, the very hardest, most difficult thing about having a child with disabilities is that, in the wonderful connections you make with other families facing the same, some of those children will not make it. It is something that I don’t think any of us ever come to terms with. Every single time a child is lost, it is gut wrenching. We feel that family’s sadness in the loss of their child to the core of our souls. We are also cruelly reminded of the vulnerability of our own.

Knowing that outliving your own child is a very real possibility.

But what of the alternative?

Sometimes I joke that I need to live forever. But there was never a truer word said in jest. For who will look after Orange when I am gone?

In bleak terms, we do not have the money to provide the full time live in carers Orange will need as an adult, nor do we have a big family, and the chance of filling that gap by providing multiple siblings for Orange to help care for him when we are dead has been taken away from us by his lack of diagnosis. We simply have no way of knowing whether we are unlikely to have another affected child, or very likely indeed. It is too big a risk to take on.

But this week I also carry with me a stark reminder that I cannot live forever and that life is unpredictable. One of my closest friends, about to start treatment for cancer, which we have every reason to believe is fully treatable, but has taken us in our minds to some frightening places.

And Undiagnosed Children’s Day, as much as it is a positive celebration of our children and a hugely important awareness raiser, also brings with it the reminder that we are facing the unknown.

It has been one of Those Weeks. A week that once today is out I will put in a box in the back of my mind in search of calmer waters. The more ordinary the better.

For now, I am firmly ensconced on the sofa, playing spot the SWAN mum in the London Marathon (watching it always makes me feel ridiculously emotional, I have no idea why…), and feeling so, so thankful to have other SWAN families in our lives. For I know they all have weeks like this too. Without them, the darker times would be unfathomable, and the happy times distinctly less merry.

If you would like to sponsor Liz in her marathon madness, and help raise much needed funds to help keep SWAN UK going, you can do so here.

Thank you x

 

You know you have an undiagnosed child when…

They say there is strength in numbers don’t they? And that’s absolutely what we have found in SWAN  UK. Our children are all so different but the challenges we face in raising them and getting the support they need are often very similar.

As SWAN parents, we all recognise the ways in which our lives have changed. Often we get through the tough times with some pretty bizarre gallows humour (and gin), and can be observed bonding over things most of us never imagined would make an appearance in our lives. Bile bags, anyone?

If you’re a SWAN parent, you might recognise some of these things. And if you’re not, it might give you a small window into some of the little quirks of daily life for parents raising an undiagnosed child.

You know you have an undiagnosed child when…

  • You jump for joy when you see an M&S Food concession opening at your local hospital. No more soggy pasty slices!
  • Your child has their very own Personal Assistant. Perhaps two. And you need another one to manage all their paperwork.
  • People who you have never met call you ‘mum’. In fact, you might as well do away with having a name all together, since most of your post is addressed ‘to the parent/carer of’.
  • You can draw up exactly 2.5ml of Epilim, in the dark, while rubbing your tummy and patting your head simultaneously.
  • You keep a running supply of controlled, mind-altering drugs in your home medicine cabinet.
  • Your house has more lifts than the average shopping centre and more hoists than a construction site.
  • Your child’s shoes cost more than yours do.
  • No matter how hard you try to ‘style it out’, that enormo-seat disguised as a giant bee and the standing frame designed to look like a cartoon monkey are never going to quite fit in with your period-chic/Skandi cool interior design. Because insects and jungle creatures are just so much more tasteful, right? Right?
 
  • You can speak at least three languages that most people have never heard of. Makaton, BSL and PECS. Clever, huh?
  • Your Amazon Prime delivery of coffee beans is the happiest moment of the month. Without question.
But perhaps the absolute number one giveaway that you’re a parent to an undiagnosed child is that it is only possible to make light of having to visit the hospital multiple times per month, or your home drowning in pieces of equipment (that have been given absolutely no aesthetic design input whatsoEVER), because you are not doing it alone.
Before we found SWAN UK we felt utterly alone. It was frightening, overwhelming, exhausting, and we really thought we were the only ones facing the difficulties we faced.
But finding a likeminded group of funny, articulate and clever parents all with their own little undiagnosed dudes changed all of that. Many of them will be friends for life. Having Orange has expanded our lives to include all these wonderfully cool people that we would never have got to know otherwise. And for that, I’m very grateful.
Thank you, SWAN UK x

 

Undiagnosed Children’s Day isn’t just for us

Friday 24th April marks the third Undiagnosed Children’s Day, a nationwide event to increase awareness of undiagnosed genetic conditions and raise funds to support the charity SWAN UK (Syndromes Without A Name) that is a lifeline for families with undiagnosed children.

But I want to explain why this isn’t just a day for us, and for families like ours. Really it’s for everyone else.

For future parents, grandparents, midwives, GPs, brothers, sisters and friends. Because no-one expects their lives to get so complicated, but having an undiagnosed child is so much more common than you might think. And knowing what to do, and where to turn, if it happens to you or someone you know, can make all the difference.

Before we had Orange, we had no idea it was even possible to have disabilities or additional needs without there being a clear diagnosis. We also had no idea that the little boy we were expecting would have any difficulties. We inhabited a much simpler world where antenatal tests instil a sense of security about the health and development of your baby and if there was anything to worry about or prepare for we’d know, wouldn’t we?

Orange was born in good health but it didn’t take very many weeks for us to notice he was having some difficulties. And while our GP agreed at his 8 week post-birth check that there were some concerns, his muscle tone was low, his neck muscles weren’t working properly, his development was lagging, he had minor hypospadias and his hearing was a concern, there was no explanation at this point about what this might mean.

With no support and no information, I spent every evening in the depths of the internet trying to match up my son’s symptoms, and my instinctual sense that something serious was wrong, with what I found in academic reports and health journals. What I really wanted to be told at that time was that everything was fine, but of course it wasn’t. The more I read the more I knew something was amiss, but if I could just find out what it was…

It was, without doubt, one of the darkest and most terrifying times of my life. More than anything, more than the prospect of raising a disabled child (which at the time felt insurmountable and which I was far from ready for, I mean, who is?), the single thing that made it so terrifying was the lack of information and support. We simply had no idea at all what we were facing, and no-one could tell us. It was a lonely, isolating and desperately sad time, when we should have been enjoying our beautiful new baby boy who was, and still is, an absolute darling little soul.

Soon enough we were into chromosomal testing to see if a genetic syndrome of some kind was causing Orange’s difficulties. Tests that would bring us the answers we had so desperately been waiting for. At last we’d be able to move on with our lives, knowing what was ahead.

Sitting on the kitchen counter top of our holiday cottage in St Ives one sunny afternoon, we got the call. Expecting the worst, I couldn’t quite believe what I was hearing when Orange’s paediatric consultant called to say his tests were all clear and revealed no sign of chromosomal abnormality. Nothing.

I’m pretty sure I’ve never jumped for joy before but in that moment I did. In that small moment, I believed that, after everything, after all the worry and fear, we actually might have a completely healthy little boy. That all the fright and panic was unfounded. I’d been ridiculous. Over-anxious. And that actually he was going to be fine…

But of course he wasn’t.

What no-one had explained to me – no doctor, no paediatric consultant, no health visitor, no physiotherapist, no cranial osteopath – was that Orange was likely to have difficulties anyway. With or without a diagnosis. That it was very possible, common in fact, for children with often quite severe disabilities to have no diagnosis at all. And that Orange could very well be one of these children.

The dawning realisation that even with no syndrome to identify the difficulties Orange was having, he still faced life with disabilities, was crushing. Struggling to reconcile the ‘all clear’ test results with my little baby boy of six months who spent much of his life asleep, rarely smiled and was no closer to being able to sit up than a newborn, I turned back to the internet to search for answers.

And that is when I found SWAN UK, the charity that supports families with undiagnosed children.

At that point, SWAN UK comprised a small group of families that all too quickly became like an extended family of our own. Suddenly, we were not alone. We could see what the future might look like for us and could share the highs and lows of life with an undiagnosed child.

No longer were we alone in facing an uncertain future with our child. We had a place to inform ourselves, to find emotional support and to connect with other families experiencing the same.

Since that time, SWAN UK has grown to support over 1,000 families with undiagnosed children. And is still growing…

Undiagnosed Children’s Day is hugely important in reaching more and more families who are feeling lost and alone, just like we did, and to give them a place to feel listened to and supported.

But perhaps my greatest hope for Undiagnosed Children’s Day, is that it raises awareness among GPs, health visitors, midwives and paediatricians so that families who walk in our shoes in the future don’t have to walk alone for so long, or to ride the emotional roller coaster that we did, thinking for so long that with no diagnosis, there must be no difficulties, only to realise with time, that it doesn’t mean that at all.

I also hope that, like Down’s Syndrome and Cerebral Palsy, being undiagnosed quickly becomes a widely recognised condition, so that parents like us don’t face the shock, alarm and disbelief that we did as we realised that clear test results didn’t actually mean an ‘all clear’.

But also, my hope for Undiagnosed Children’s Day is to say to families starting out on the same path as us, and to those supporting them, that having a child with severe disabilities, with an entirely unknown future, while difficult, has brought many more happy times to our family than unhappy ones.

That while disability felt utterly terrifying, that as humans we are resourceful and capable. While we never expected our lives to get so complicated, we wouldn’t change it for the world.

SWAN UK needs your help!

You can help support families with undiagnosed children by donating to SWAN UK.

Currently a large proportion of the money that supports SWAN UK comes from National Lottery grant funding that is due to end in April 2016. The charity must secure alternative funding to continue to provide their unique service to families of children with undiagnosed genetic conditions beyond this date.

The money raised through Undiagnosed Children’s Day 2015 will go towards supporting SWAN UK in the future.

Donations to SWAN UK can be made via texting SWAN11 £[amount] to 70070 or online via their Virgin Money Giving page.

Thank you.

https://www.linkytools.com/thumbnail_linky_include.aspx?id=254936

Undiagnosed is…

“But how can he have no diagnosis, how is it possible not to have a diagnosis?”
When Orange’s mystery condition was first becoming apparent, I simply didn’t entertain the thought that we might never receive a diagnosis. While we waited the interminable weeks and months between (many) tests and their eventual (non) results, I mounted a personal search mission to seek out information on every potential syndrome, disorder and brain-related condition I could, in a hope of finding a match for his symptoms. As soon as little heads had hit pillows at the end of the day and the house was quiet, I would affix myself to the sofa, wine in hand, and delve alone, pulse rocketing, into the depths of every medical report and journal I could lay my hands on via Google.
I can’t count the number of times I sat in front of a blank search box, panic stricken, filling it hopelessly with various strings of symptoms, longing for an answer, thinking that if only I could just get the combination of words right, Google would magic an answer, even if it was one I wasn’t ready to hear:
“torticollis + hypospadias + hypotonia”
“low muscle tone + delayed development”
“poor head control + development + mobility”
There had to be an answer. There just had to.
But the more I Googled, the further I sank into a vacuum of seemingly endless syndromes, neurological disorders and brain-related conditions, any one of which matched Orange’s symptoms. I soon realised my naivety. I learned how little we actually know about the human brain and body. Not only are there thousands upon thousands of known genetic, metabolic and neurological conditions that just might be the cause of Orange’s difficulties, there are also thousands, possibly millions, more that we have no idea about, that there is no name for, no prognosis, no sure-fire therapy or treatment path.
Science is a wonderful thing but, as I quickly discovered, it simply hasn’t caught up yet. Humans are continually presenting science with mysteries it has not yet been able to solve. My own research, and the hollow, hushed medical voices and grave, guarded consultant’s faces we were meeting, had told me there was definitely a ‘something’ but the nature of that ‘something’ was anyone’s guess.
For a while there, right back at the beginning, the void left gaping by this undisclosed mystery was, I’ll be completely straight up, more than I could sanely endure. I clung on to calendar dates in the diary when test results were due, existing in between times under a heavy cloud of denial and hope. I survived borne up largely by a toxic amalgam of cheap chocolate, bad TV and wine. I shut the world clean out and ruminated, alone in a tired and frightened head, agonising over how I might bear it if another day ticked past without knowing what the future held for our boy.
Three years, several house moves and a complete change of lifestyle on, and my perspective over Orange’s ‘undiagnosed-ness’ has changed completely. While new and terrifying medical symptoms have reared their ugly heads during this time and veered me straight over the top of my own personal fear scale and back again, we have learnt as a family to live with the unknown and face the challenges head on. Not just to survive, to exist, allowing the days to pass. To really live.
To us, ‘Undiagnosed’ has come to stand for many things that we are learning along the way:
 -Unknown is OK. For a planner, someone who likes to schedule life to within an inch of itself and maintain full control at all times, this was a toughie. Not knowing what Orange’s life expectancy might be, whether he will learn to walk or talk, whether any future children of ours or Beep’s might be affected, took a while to be comfortable with. These unknowns are all so huge, that if we pondered them too much or too often, they would simply swallow us up. Whole. Instead our focus has shifted to the here and now. We have no choice but to live entirely in the moment, with only a half-eye scanning the horizon from time to time. And I’ve discovered this is a far happier way to live.
– Unknown = Unlimited. No-one can tell us what the future holds for Orange. Some have cautiously guarded us against being too optimistic and our lives are now filled with machinery designed to help us with the practical aspects of having a child with very limited mobility. (I won’t pretend I didn’t feel angry at the world for a while when the lift shafts were being dug out of our beautiful seaside garden, or feel more than a little sadness that Orange’s ‘big boy bed’ is more cage than racing car, but with the right practical equipment in place we are free to enjoy our boy.) The flip side of the unknown is that no-one can place limits on his potential and he continues to surprise us. The boy who ‘might not ever be able to do anything’ keeps showing us that he can, he wants to, and he will.
– Understanding comes from unexpected places. When life trips along easily and without upset, it’s easy to skim over the relationships in your life without paying much heed to their depth or authenticity, or really connecting emotionally with those around you. But when you are plunged head first into adversity, superficialities melt clean away and you learn a great deal about people and their individual outlook on life. It’s illuminating and enriching.
Having Orange has taught me that even though your neighbour, boss, old school friend or postman may not be facing the same personal anguish as you, everybody is dealing with their own fly in the ointment, their own deep water to wade through. Perhaps the greatest and most immediate understanding I have encountered so far, of the emotional challenge that ‘undiagnosis’ presents, came from an old work colleague of mine who I hadn’t seen for years but was doing her utmost to live a bountiful, joyful and love-filled life against the backdrop of her own terminal cancer.
– Undiagnosed is not unusual. In fact, it’s really quite common. There were we thinking we were unique, different, one of a kind, when it turns out there’s quite a crew of us all swimming around in the same strange pool. As fate would have it, the very year Orange was born, a group was reconvening and coming together to create something that unites families like ours to face the unknown as one.
SWAN UK is the charity that supports families with children who have a ‘Syndrome Without a Name’. Through this charity I have met some of my now absolute favourite people. I have laughed with them, cried with them, celebrated feet taking their first steps aged 13 and mourned babies lives lost. We decipher genetics results together, make battle plans for dealing with errant education authorities or consultants that lack bedside manner. We enable each other to continue in our roles as advocates for our children and pick each other up when our energy and emotional strength is depleted. We ride a pretty intense roller coaster but what makes it ok is that we do it together.
And so now, we celebrate our strength in numbers, and the wonderfulness of our SWAN children, with the second Undiagnosed Children’s Day, on Friday 25th April 2014. To celebrate, I leave you with this fabulously sweet and funny video that explains all about why Undiagnosed Children’s Day is important, because in the words of little Dominic (the cool dude in the Rolling Stones t-shirt who stars in the vid), ‘we don’t all get to be adults’…

https://www.linkytools.com/thumbnail_linky_include.aspx?id=232312