Knowledge is Power #undiagnosed #UCD #dylansstory

Before Dylan, a SWAN was a large aquatic bird. I had never heard of a genetic syndrome as being undiagnosed. Before finding SWAN UK (Syndrome without a name)


I’ve since found out a SWAN looks like this! (& remarkably can drive a car!!)


I had absolutely no idea we were not alone. 6000 children are born in the UK every year with a genetic condition that cannot be diagnosed because it is so rare. As a parent of a SWAN, life can seem lonely and you can feel isolated, forever seeking answers to endless questions.

In order to raise awareness for the many children, like Dylan, who are living with an undiagnosed syndrome, I decided to take ‘Dylan’s Story’ public. Undiagnosed Children’s Day (UCD) is huge annual event so we rely on as much media coverage as possible to raise awareness. In 2015 ITV News were looking for an undiagnosed child at GOSH and Dylan was selected to feature in their following day’s programme whilst having his Heart Echo. Blink and you’d miss us. Hours of filming and numerous interviews condensed into ten seconds. I was so proud to have been part of UCD and for introducing Dylan to the world.

Later that week, prior to UCD15, Lauren Roberts (National Coordinator, SWAN UK) published a post on social media searching for a family to share their story live on the BBc’s Victoria Derbyshire Show the very next morning. Without hesitation I volunteered. Quick DIY spray tan, sleep in rollers and, voila, we were ready for our 6am pick up. Traffic was horrendous as we nipped in and out of bus lanes in the taxi. We arrived with only seconds to spare, whisked into hair and makeup, had a very brief introduction to Victoria, then we were live on her sofa. I hadn’t rehearsed; it all just came from the heart. Being interviewed about living with an undiagnosed child could be my subject on Mastermind.


Knowing people were watching and receiving their support encouraged me to continue raising awareness. ‘Dylan’s Story’ was born.


As a result of my subsequent blog and Dylan’s Social Media, I was contacted by journalists wanting me to share our story. We appeared in several publications including; the Radio Times, What’s on TV, Channel 5 News, local newspapers (Brentwood Gazette and Epping Forest Guardian),


Articles for GOSH (Patient, Donors and Staff) Magazines,


We featured (stared 🌟 haha!) on BBC’s DIY SOS for GOSH when they renovated a beautiful rooftop garden. To be asked to be part of DIY SOS at Great Ormond Street is such an honour albeit bitter sweet, for Dylan has been a patient all of his life. Dylan had great fun filming though and kept Presenter Nick Knowles and his team on their toes!!


We even appeared on a South American Breakfast show.
Social media has a huge impact on society and even the celebs love to partake! Because of the way society works, Dylan has gained a superfan who we are in ore of. A truly wonderful inspirational lady. Katie Piper we 💖 you.


We live each day making memories and we have made some beautiful memories whilst raising awareness.


We were literally raising awareness across the globe. The more exposure, the wider the audience. My mission is to spread the word #undiagnosed. No one knows what the future will hold for Dylan, but no one knows what the future holds for any of us. Dylan is an inspiration who continually reminds us what is truly important in life. Dylan has created an incredible bond in our family making us who we are: strong independent parents who take what’s thrown at us and make a life out of it.


In today’s age of tablets and smartphones, it is incredibly easy to communicate your story with the world. I urge you, if you have a message you want to spread, publish blogs/ vlogs, and create Facebook/ Twitter accounts. You will be amazed how much support you will receive and, what’s more, learn you really are not alone.


Undiagnosed Children’s Day is a nationwide event on Friday 28 April to increase awareness of undiagnosed genetic conditions and raise funds to support SWAN UK, the only dedicated support available in the UK for families of children with undiagnosed genetic conditions.

Last year fundraisers, schools, families, companies and donations raised a (approx) £20,000! With your help this year we can take it beyond this figure. To donate TEXT SWAN11 £3
(or any amount up to £10) to 70070 #undiagnosed

Dylan is also fundraising with an outstanding event.  Bigger and better than last years later this year. I am so exited I just can’t wait, and (all being well!) I will have 2 working legs this time to be able to join in. Raising funds for Dylan’s indoor and outdoor sensory rooms. To donate TEXT DYLS65 £2, £5 or £10 to 70070 #dylansstory

Raising awareness is just as important, if not more so than raising funds. Knowledge is power. Please spread the word (& donate a pound or 2 to both amazing causes. Please! 😘)

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(Channel) FIVE⭐️STAR

  

I thought I’d very quickly squeeze a third ickle Undiagnosed Children’s Day blog in just in time for ‘the big day’
A lot of you have seen on mine and Dylan’s Facebook pages our interview which aired this evening on channel 5 news. In case you popped off to Venus or perhaps Mars this afternoon you can catch it here. Dylan on The News

It’s a Bitter Sweet experience, as I would be a liar if I said we didn’t enjoy our ‘five minutes of fame’ ‘Lights, Camera, Action’ but the serious reasons behind why we are being showcased on national news is very bitter. For our beautiful, amazing little fighter does have an Undiagnosed life-limiting condition. 

  

Apart from the fact it looks like this particular camera has added 10 stone, not just 10 pounds, my gorgeous new very high nude designer shoes didn’t make the cut and I obviously had too much hairspray which did the reverse and made my hair look sticky up not sticky down (and yes I am very self critical) oh and rein-acting Goldilocks and the three bears on the teeny weeny little chairs which being brutally honest felt more like sitting on a loo – I DID IT (shouty capitals) confidently, eloquently and just getting our story out there. 

  

Dylan is our Peter Pan!!!!!!

 
So with a really poorly little girl (who should have been home in bed) and a tired little boy we set off to our favourite place SNAP Charity where they kindly let us use their amazing premises to film. Thank you so much SNAP, we ❤️ you. 

The gorgeous Lauren from SWAN came along to support me (I think she really just wanted to spend a couple of days in Essex) she even got to visit the SugarHut! And promised next time she visits to get the ‘right shade of orange‘ fake tan, just like me lol!! There’s an Essex girl in there shouting to get out!! 

  

The C5 News reporter and cameraman were fantastic. Immediately understood just how much Dylan could take of the filming and knew just the right time when to cut so ‘the star of the show‘ ⭐️ could have a ‘Robinsons Orange Fruit Shoot‘ break! 

  

So me, as my normal ‘cold as ice‘ self chatted for the best part of the three hours we were interviewed and filmed for. Showing no emotion, even when the cameraman welled up. Babbling on about my favourite subjects; DylanUndiagnosed and SWAN….. 

Dylan and Scarlett were absolutely amazing and both made me immensely proud of how well behaved they were and how they both took to the camera like a ‘SWAN to water#proudmamma 
The love my children have for each other could melt Arendelle on a bad Elsa day! She is he’s tonic and he drives her mad. #perfection 

Tomorrow is Children’s Day and raising awareness for Dylan and the thousands of children born each year with an Undiagnosed Genetic condition is massively important to me. 
There are loads of awareness days throughout the year, every day someone is raising money for one cause or another but if you kind people reading my blog could dig really deep and spare £1 it would help SWAN UK and all of our little SWAN‘s.

To donate click here  Just Giving SWAN or TEXT SWAN11 £3 (or however much you would like to give up to £10) to 70070
  

 

I will leave you on that note to squeeze your babies tightly. Being Dylan’s ambassador is tiring work 😴

  

Confessions of a ‘Shopaholic’ & a ‘Special Needs Mummy’ 🛍

Confessions of a Shopaholic, oops that’s another story, I mean Confessions of a Special Needs (SWAN) Mummy…. 

  

 
(Hubby, please bypass this paragraph it is not for your eyes 👀). Well if I am honest having a Special Needs Child and being a Shopaholic seem to go hand-in-hand for me, for if Dylan is having a good day, to celebrate, I shop 🛍 and if Dylan is having a bad day, to compensate, I shop 🛍. The fact is I shop full stop 🛍🛍 and the fact that I can do it in person in a shop, online at home or on the go from my smart phone at the hospital is just a bonus 🛍 😉🛍 24/7! Fact shopping is therapy. 

  
One of the ‘greatest’ things about being a ‘Special Needs Mummy’ is that it has taught me to become the person I am today. A Selfless, dedicated and hardworking mum who values every single moment of every single day. 

Life is a gift but Dylan is the biggest gift *albeit in the smallest of packaging with no label! 

  

I’ve heard so many cliché statements over the years I thought I’d share with you my ‘Top Five’ I  am sure other Mum’s! (Parents!) of Special children can relate to this…..

  

  • ONE: Special Needs Mums are always asked “How do you cope?? I couldn’t……” 😩

Firstly yes you would!! You would have to, just like I have to. There’s very little choice in the matter. You may think I go above and beyond the call of duty for my special little boy but I only do what is needed to keep him well, happy and here. 

Anyone that says they couldn’t cope obviously doesn’t have to. 

I often hear….

I haven’t slept because my child was (delete as appropriate) teething/being sick/has a cold” (etc. etc.) In fairness if I was to only have one interrupted sleep, I’d feel rotten the following day too. But the reality is I haven’t had a full nights sleep in almost six years……. It’s normal in our unconventional lives

  • TWO: Special Needs Mums are always told 

You need to look after yourself, you need to be well to look after your child……” 🤒

Never had a true word been said, and in theory a walk through the park but in reality it’s a marathon and there really isn’t enough hours in the day to put yourself first. For when the 24 hours in  a day are dedicated to caring for your sick child, us mums tend to slip on to the back burn. *tends to be a slight juggle when a Special Needs Mum has her own health problems. 

We would all love a weekend trip to a Spa once a month or even once a year (*once a decade or even once in a lifetime would be more like it!!) but our kiddies come first. Period!!

  • THREE: Special Needs mums are always asked about………. Siblings and “How does ‘she’ cope??” 🤔

As a parent you want to give equal attention to all of your children. In my case two. But when you are blessed with one ‘Special‘ one and one equally as special but her needs are purely of wanting sole mummy attention, this can be hard (*back to my juggling act). As a Special a needs mummy when their non special needs child is a capable, clever and intelligent ten year old you expect them to do a lot of mondaying tasks but when you realise the tasks in hand are to pass the oxygen and help comfort sibling following watching mummy give home injections, the tasks are not too mondaying after all. It does feel like there is never enough of my attention to go around. No matter how many trips to ‘Smiggle‘ we do!! On the plus side she gets unlimited iPad time whilst I’m on phone to endless Doctors, Nurses and Therapists!! 

  • FOUR: Special Needs mums would have been asked along their journey 

If he doesn’t talk, does he sign” NO! “How do you communicate with him??” 🙄

Communication, or lack of it in our case is starting to get frustrating. Frustrating for our son who at nearly six years old is still babbling the same six sounds he’s been saying for almost four years. Cognitively, not able to sign, yet fully aware of what he would like to ask for. He finds other ways of asking, pointing, grunting, crying, changing tones in his voice, laughing when we get it right and pushing away if we get it wrong. Frustrating for us when when we don’t get it correct first time. 

People automatically assume communication by speech is natural, and generally it is. But in our home it’s not so we have to find our own way to communicate.  

Special Needs Mums have to learn to understand their non-verbal children. It’s just another part of the job! 

  • FIVE: This one only us SWAN Special Needs Mums will have heard…… 
  • “What do you mean ‘he’s’ Undiagnosed??”
  • “When will ‘he’ be Diagnosed??”
  • “How does it make you feel ‘him’ being Undiagnosed??”

And only a SWAN mummy can answer……. 😳

  
Without a diagnosis life can be very isolating. Families often feel like they don’t ‘fit in’ and without a diagnosis it can be very difficult to answer questions about their child. They don’t know what the future holds for their child – Will they walk? Talk? What will their life expectancy be?

It’s been a long journey for us a family coming to terms with Dylan not having a diagnosis. I’ve been through lots of grieving stages for the child Dylan isn’t. 

  • Denial, he will get better, it’s just a blip, the doctors don’t know what they are talking about (all of them!) 
  • Anger, why me, why Dylan, why us, it’s not fair (*throws dolls out of pram)
  • Depression, fed up, can’t carry on, peers all continuing in their ‘normal’ path whilst Dylan is stuck in the mind and body of a baby. 
  • Acceptance, realising we have been blessed with ‘THE MOST’ amazing little boy, one who is unique, a tough little fighter, who is incredibly handsome, very determined, extremely long and happy, a little boy who just takes whatever life throws at him with a pinch of salt. Accepting we are the luckiest parents alive to have been sent this little angel who has make us the strong loving parents we are today. Realising Dylan puts the ‘Special’ in ‘Special Needs’. 

Did you know six thousand children are born each year with an Undiagnosed Genetic Syndrome. Undiagnosed Children are known as SWAN’s. (Syndrome Without A Name) 

  
SWAN is a term used to describe disabled children who are thought to have a genetic syndrome or condition that doctors have so far been unable to identify.
SWAN is not a condition, it is not a diagnosis and it does not refer to one specific syndrome or condition. In fact, the reason that many children remain undiagnosed is because it is highly likely that they have a very rare syndrome or condition.

SWAN is a lifeline to hundreds of families like ours. To raise awareness for Undiagnosed children, like Dylan, this Friday, 29th April is Undiagnosed Children’s Day. It is a nationwide event to increase awareness of undiagnosed genetic conditions and raise funds to support SWAN UK, the only dedicated support available in the UK for families of children with undiagnosed genetic conditions.

  
So after almost six years of Why, What, How questions we are retired to the fact that Dylan may never get a diagnosis. Even if he was diagnosed it wouldn’t change the daily care Dylan requires. It would be so rare & wouldn’t make Dylan better or change his life expectancy but it may help others in the future which is why we will continue with Genetic studies. 

And so he writes the story #dylansstory  

  
Follow us on Facebook Dylan’s Story

Don’t Worry be Happy 😃😃😃

  

Any parent who has a child who is medically complex means business!   

  
They should have a sign around the neck saying ‘DO NOT MESS! (Especially before our first infusion of the day of caffeine!!) This includes the endless doctors, nurses and health professionals involved in their care that think they might know our children. Without any letters after our names we are more qualified than most of them. 

 

Now please don’t get me wrong, not only could my Dylan not live without their care and input and I couldn’t perform any surgery as they can (although I would happily give it a try), I am simply saying until you have the job, like us caring for your children who are 100000% dependant on you 24 hours a day 7 days a week with no real signs of being able to become any more self sufficient in the future and on the astounding and taxable amount of £0.369642857142857 per hour as a carer, you don’t really know them at all. 

  

Us parents of medically complex children have had to develop a huge sense of humour! Most of the time if we don’t laugh we will cry. That, and a really thick skin. We’ve had to find ‘our‘ main server to switch off our emotions or onto a needs-must basis. Along with appreciating the quality of life and not so much of the material things (oooooooooh always a little room for a designer handbag and sparkly shoes! every girl needs a little pick me up after all!!!) 

  

Welcome to our world!! 
Syringes in handbag, clanging bottles of potent meds, subcutaneous injections and butterfly needles on hand, frustrated non-verbal children, endless hospital appointments, non existent sleep patterns, and scarily not wanting to look to far into the future. Who knows what the future may bring?? and all of us SWAN parents with at least 2 million, 300 hundred and 66 unanswered questions. Number One being; ‘what’s wrong with my child?’ 

  

Now. Statistics I don’t have but out of the medically complex children in this world there are the ones whom, like Dylan are #undiagnosed. This has added plenty more bumps in our already rocky road *definition = A hindrance in some quest or extended task, As most of these children, like Dylan are serviced from the head to the toes. (See I am humorous ha ha!!) 
Getting over 14 different teams, professors and their nurses at Great Ormond Street Hospital all singing from the same hymn sheet is incredibly hard work. This is another part of my job, it’s lucky the salary so good else I’d be on the look out for another one!!!!!

  

Which is why UCD taking place later this month, on Friday the 29th of April is so very important to us. 

  

Undiagnosed Children’s Day is a nationwide event to increase awareness of undiagnosed genetic conditions and raise funds to support the work of SWAN UK (syndromes without a name) – the only support available in the UK for affected families. 
There are lots of ways you can help support the day – why not change your social media profile picture (to this one below) or cover image and if people ask you what your picture is of, just by you telling them raises a little more awareness for both SWAN UK and Dylan’s Story. #undiagnoed #dylansstory

  

Did you know over 6000 children each year are born with an undiagnosed genetic condition? Before Dylan I had no idea. Nor did I realise it is even possible for someone to be #undiagnosed. This is not always a temporary stage. Families can face a lifetime of not knowing and struggling to access the information, support and services they need for their children. With out a diagnosis these children (and their families) need to be taken seriously. A lot, like Dylan on several genetic studies but because of the rarity still may never get the label they’re so desperately searching for. 

 
Children living with an undiagnosed genetic condition do not fit into any particular boxes. They have no label or title and most have no prognosis no real expectations. SWAN UK is a lifeline to hundreds of families like ours where our children all just seem to fit nicely. 

When doctors say they simply can not answer your burning question it leaves your brain frazzled. 

  
What do you mean you don’t know. You must have treated plenty of children just like Dylan??? 
When we were first told this back on Sky Ward at GOSH when Dylan was just 6 months old we were younger then, much more naive our control was purely in the hands of these professionals whom we looked up to desperately after their help, advise and hope of making our sick little boy better and to put this awful nightmare behind us. 
Thinking the next consultant, our second opinion will have our answers, now speedily approaching 6 years old and with almost 50 health professionals under our belts (not including the 100’s we’ve met along the way) still with no answers we’ve retired to the fact we may never ever get our diagnosis. ‘Dylanitis‘ as it was first joked about at GOSH!! 
Having a child who is a SWAN can leave parents feeling very isolated, not having anyone to talk to with perhaps an older child to see what the future may hold for our little boy can be a lonely and scary place. 

  

Optimism (and prayers) is the only way forward for I am at the conclusion not one single one of us knows what’s around that corner, the only difference you are able plan ahead in yours and your children’s life. For us we are so grateful for every single day and cherish every moment. 
Enjoy today, live tomorrow as it turns into today. Yesterday is a memory to cherish forever. 

  
Being part of the SWAN community has helped me become the strong independent woman I am today. I’ve met some fabulous ladies all traveling the same rocky road as me and some amazing SWAN friends for Dylan. Thank you SWAN UK
Dylan may or may not get a diagnosis in his lifetime but he will always be a SWAN
This is why UNDIAGNOSED CHILDREN’S DAY is hugely important to us. 

Please show you’re support in what ever way you can. 
  

(Who) Run the World 🌍 ((Girls) SWAN Mummies) 👭👭👭👭

Eeek I did it!! *shouts with a sigh of relief. It’s done. It’s over and I am on the train travelling back to Euston to reunite with the 3 loves of my lives 💙💙💗. Without tears (on my part) with a little wobble (on my part) a whole lot of Facetime and all in the name of love ❤️

  

Separation is desperately hard for me seen as I have never done it, not in Dylan’s lifetime anyway. But when I was asked to attend SWAN UK’s Bloggers Workshop I knew I had to, no, I wanted to go! 
 
Blogging is my tonic 🍷Blogging is my release 🤔 Blogging is my way of sharing the realisation of my world, Dylan’s Story to all you lovelies who take the time to read it and follow our little life adventure 🤗

Firstly, let me tell you how amazingly well my gorgeous husband coped, one full night of no sleep out of the two *he got off lightly, welcome to my world Mr. M!! He even got to take Scarlett shopping, went for a meal with the kids and as exhausted as he says he is, was elated at well how he managed and so was I. *now I know I should be jumping for joy and re-packing my bags but in fact I won’t be doing it again anytime soon so don’t worry mummy’s on her way home! #missedmyfamtoomuch

  

SWAN UK; Syndrome Without A Name means a whole lot to me. Having a medically complex child with no diagnosis is like having a cheap handbag. #nolabel. Now, I am not comparing Dylan to a Michael Kors Handbag *my other love ❤️👜 I am simply saying it’s hard sometimes not having a label for your goods! And after being so involved in Undiagnosed Children’s Day (UCD) 2015 knew it was so important to get on board and help raise awareness (& funds) for UCD 2016 (29/04) 
And boy did I do it…. Staying in Birmingham for two nights! Travelling by tube and train *all by myself #idontdopublictransport #alone 

SWAN UK is a small charity which started as an extension of Genetic Alliance which was established in 2011 with a 5-year grant. Today, SWAN UK has its own brand identity and two prestigious corporate organisations who are in partnership raising money to help this charity whom help hundreds of families. But these alone can’t keep a charity afloat. It’s actually not just money we need. ITS AWARENESS. 

SWAN UK provide support, shares information and increases awareness and understanding of undiagnosed genetic syndromes For children like Dylan. Because families like ours  find it harder to get the help they are entitled to because they do not have a diagnosis *in brief SWAN is fab and do loads for families like us. But sadly 2016 sees the end of the 5-year grant so this is where they need your help. 

  

Yesterday, 13 like-minded, fabulously gorgeous woman, all who write superbly about their own lives with their SWAN/’s and 3 SWAN representatives sat around in a large meetingroom,  technology everywhere, with copious amounts of coffee flowing ☕️, yummy pastries 🍩 and even an afternoon pick me up of Prosecco 🍸to discuss how we can make Undiagnosed Children’s Day 2016 more #outthere *in the words of my daughter! 

  

In my opinion *and please don’t get me wrong, each and every charity is as important as the next to the relevant people but some are just more known and publicised than others and if I could I would give to them all… So, back to my opinion, a children’s cancer charity may find it easier to raise money because there is a lot of awareness and publicity around this sensitive subject. If you were asked you to donate £1 of your hard earned money to help a child with cancer almost everyone who could would. Right?? If someone asked you to donate to #HavenHouse a children’s hospice to help a child with a life-limiting condition you would. Right?? But if I asked you to donate £1 to SWAN UK to help an Undiagnosed child like Dylan. Would you??  There is just not as much awareness and understanding in the general public of the importance of SWAN UK, similar to the lack of support there is for some families within the medical profession *not all may I add. 

The stigma of childhood cancer or a children’s hospice would possibly have a bigger impact on the general public’s heartstrings. But the reality is Undiagnosed Children need even more help raising funds and raising awareness as many of them, like Dylan are life-limiting, complex, medically challenged, non verbal, non mobile…. You get me know. Right??? *there is a just giving link, which can be found on SWAN UK’s website but I am not asking you for your money at this stage, just to think about where you give your money too **thats not to say I won’t ever be offering you the link to SWAN UK’s just giving page

Did you know (in a survey) 5 of the top 10 words used to describe experience of parenting an undiagnosed child are…..

  • Isolated – no other child is like Dylan
  • Frustrated – will he walk? will he talk? Will he ever get a diagnosis? Why us? 
  • Lonely – hours in hospital waiting rooms! Hours in traffic to and from appointments? What feels like hours waiting for your child in recovery.  
  • Anxious – will he have a seizure today? Will he be poorly today?
  • Stressed – do I need to prove an explanation for this *shouts very loudly! 

* Swan mummies and daddies have more unanswered questions than parents of children with a diagnosis and some live day to day unsure of the next 

  

    So lots of talking and listening and taking notes was done and whilst I would like to continue raising awareness for Dylan’s Story and his undiagnosed genetic condition, I will be coinciding this with raising awareness for Undiagnosed Children’s Day which takes place on the 29th April. 

    Dylan’s Story has done a little bit of media but if anyone reading this feels they might know someone in the media albeit news, breakfast shows, radio, Nationals, locals….. I am on a mission, please help by forwarding them Dylan’s Story details after all 2016 marks the year of Dylan becoming the 6-year old baby!! 
    As my train approaches the station and before my feet hit the streets of London Town, to sum up my weekend away, 

    • I have, with my humungous suitcase got a train to and from Birmingham
    • Shared a hotel room with a friend I’ve only met virtually, 
    • Met 12 other fabulous ladies, 
    • Had 2 lovely meals out, 
    • Sat in an 8 hour conference, 
    • Talked till I lost my voice,
    • Had a little bit of ‘me’ time, 
    • Had not one but two child free sleeps *feel worse for it I must say
    • But to top it off, my 3rd favourite man came top in our poll!! #robbiewilliams

      

    So, before I go on my promote, promote, promote mission I’m gonna get off this train, get myself home and squeeze my babies. Mammas a coming for ya x

    When you wish upon a star…… ⭐️⭐️⭐️⭐️⭐️

    Friday 24th April 2015 will be the third Undiagnosed Children’s Day and as the years go on this day means so much more to me and my family. 

    This is to raise awareness for SWAN UK (syndromes without a name) the charity in place to support families UK wide like ours, who are affected by these conditions and the word ‘undiagnosed

      

    What is an undiagnosed child?? 
    A child who is so complex but no doctor can explain ‘what is wrong with them’ a child that avoids ‘another’ bullet when ‘another’ test comes back unsolved. 
    How you ask??
    If I had a penny for every time I’ve asked this question in the last 4 years and 8 months I would be a very rich lady. 
      
    Like most undiagnosed children, they are put through the hundreds of tests and investigations some intrusive, some completely unnecessary; some that just make me want to scream……. 
    Especially when the results come back as just ‘normal’. 
    What is normal??
    🔹A child like mine can’t be having several seizures of sort a day but nothing untoward showing up on his brain scan surely…….. Yep……
    🔹A child like mine can’t just stop breathing because it’s normal…… Yep……
    🔹A child like mine can’t be almost five years old but stuck in the body and mind of a baby because it’s normal……. Yep……
    🔹A child like mine can’t have so many health complications, be classed as having a life limiting life threatening condition because it’s normal…….. Yep……..
      
    Normal…… Normal results. Now back in 2010, 2011 and most of 2012 this word normal, the phrase ‘Nothing Wrong’ made me jump with joy. “See; there’s nothing wrong with him” I’d say. Be delighted. But then reality set in. Ground hog day repeated and I needed answers. 
      
    Why? How? When?
    Why was my child a poorly child?
    Why us?
    Why can’t he walk?
    Why is he in so much pain?
    Why can’t he talk? 
      
    How can we make him better?
    How can we make him talk?
    How can we take his pain away?
    How can we make him walk?
      
    When will he sit up? 
    When he will be better?
    When will he talk?
    When will he walk? 
    When will he be…….. Normal????
      
    How can my child be ‘Normal’ or Neuro-Typical as we call it these days when he can’t do any of the things all the other children can do?? 
    From 2012 to now I still let him undergo all these intrusive investigations just in case. Ruling out most of the obvious syndromes, the agonising wait, the agonising hope, My husband on the other hand would rather not. But we agree to do it for the sake of our little boy. Our little Peter Pan.

     

      
    What is a diagnosis; which once would have meant the world to me?? A name? A deletion or perhaps a duplication. A list of letters and numbers that wouldn’t necessarily mean all that much. Something so rare that nobody would give me much more information that I already know. 
    A diagnosis wouldn’t change our Dylan, 
    A diagnosis wouldn’t make our Dylan better. 
    A diagnosis would mean we wasn’t a SWAN anymore
      
    We already have a life limiting label, we don’t need exacts…….. 
    A diagnosis brings a prognosis and without one of these the world is our oyster. Our special little boy can continue defying all odds, the doctors and everyone else. He will continue surprising us with his strength and determination. He is our real life superstar.

      
    There are thousands of undiagnosed children in the UK alone with approximately 6000 disabled children being born each year whom will remain undiagnosed and each one is an individual, special and unique and what makes them all alike is the community we belong to. SWAN UK. (Syndrome without a name). An extension of family. A huge and growing community of parents celebrating their children, supporting them in times of need or just when they need picking up. (We even offer fashion advise if it’s needed!!!) A place where we can talk to others who just ‘know’. Advise on many many things. There’s always a friend available 24/7 (as most of us SN parents don’t do sleep, sleep is for wimps you know lol!!) 
    Between us we make more sense than a lot of medical professionals!!! 
      
    And then there’s the team behind the scenes putting it all together. Thank you all!! 
      
    Undiagnosed Children’s Day is celebrated Nationally to raise and increase  awareness for all of our special children with undiagnosed genetic conditions and to raise funds to support SWAN UK (syndromes without a name)


    Across the country next week there will be undiagnosed awareness meet-ups withs lots of beautiful SWAN’s and I for one can’t wait to meet some new ones….. 

      

    The Sun is shining, bare arms are out! So please dig deep and as Mr Tesco’s says ‘every little helps’