Onwards & Upwards 😀

Well hello! I Haven’t blogged for over six months. 
Haven’t had the time. 
Time…… something I’m almost always late for. This isn’t a New thing. Happened when I was a teen. I’ve got better though. Never more than half hour late….. mostly!! 


But ALL of my time is being taken up caring for and being a mummy to my little toddler ( I say toddler in the loosest of phrases ) as that’s exactly what Dylan is trying to do. 


My 7 year old baby is turning into the funniest, cutest, most loving incredible little toddler. The little boy stuck in the mind and body of a baby is starting to develop ever so slowly, but ever so…….


Dylan by rights should be in Year 3 ‘Juniors’ but instead I’m still continuing to home educate my pre-school aged little boy. 


Dylan’s developed the most wonderful character. He’s oh so funny makes us laugh 24 hours a day ( sleeping is still not very high on his priority list 😴 ) He’s into everything now, he’s even found a love for Peppa Pig and does the cutest little snort when watching her. He picks Peppa up along with the remote and that’s him verbalising what he wants to do. 


He plays with his toys (I say plays. He does a lot of throwing and squashes a lot of potato waffles over his toys, toys like to eat you know!) 

For a non-verbal child he makes a hell of a lot of sounds and communicates by using ‘ ‘Dylan-aton’ (Makaton is far too common 😂) 


McDonald’s, Fruitshoot, sweets and choc (dairy free of course) have all got their own signs. Dylan invented them all and they’re fab. 

Both his Nana’s have their own names. Nana S is Nana Mum (he’s picked that one up from me calling her) and Nana F is Nana Bum Bum (no words!) 

Grandpas Taxi ride to McDonald’s has its own sign but I couldn’t even type what he does. We just know. 
As for Papa, Dylan mimics the funny noise he makes down the phone. So everyone has their own ‘new’ identity. 
The absolute love of Dylan’s life is his big sister Gaga, whom he sits at the front door whilst she’s at school desperate for her to be home. 

Eeeeeeeeeeee (Daddy) gets the credit for clearing up sick. Dylan’s MTX chemotherapy injections make him sick and he continues to tell me daddy clears it up (even though it was me!) Dylan jumps all over Daddy when he gets home wanting to play. 

As for me, Dylan’s learnt to climb on my lap, rest his head on my shoulder and give me a ‘Dylan Cuddle’ I’ve waited over 7 years for this and I happily stop dead to cooperate as these cuddles make me the happiest proudest mummy ever. Oh and when he blows a kiss too, I’m in heaven. 

He’s a quirky little character, loves playing ‘I see’ and literally hits himself in the face covering his eyes. Loves (trying) to do head stands (this worry’s the life out of me as he is so fragile) He points (well pokes, scratches and basically hurts) to my face parts as we learn the eyes, nose mouth etc. But no. Dylan prefers the neck. (Have you ever been pinched on the neck by a small 7 year old. Ouch!) Giggles when he try’s to do the conga, pulling on the back of my top singing La la la. 


He will only drink out of a new orange fruit shoot, has to be Asda teeth and lips and now loves a fish finger. Absolutely loves a shopping trolley and a credit card (don’t know who he takes after??) 


He lay on the floor with his head down if he’s had a seizure and gives a little cry to tell me if he’s in pain. Points to the top of his leg each evening before we inject his Anakinra and goes over to the chair when it’s time for his immunoglobulin infusions. But when it’s time for his chemotherapy he knows this makes him sick and does the sound effect to go with it. 


Honestly the list goes on of how funny our handsome little man is. Our teeny little boy who has the rarest of undiagnosed condition, doctors didn’t think would make past 5 months old, wouldn’t walk let alone sit up. Continues to amaze and inspire me daily. He lights up our lives and we wouldn’t change him for the world. He’s taught us to laugh again and to cherish every single day we have with him. 


It’s Dylan’s Story & he writes the chapters. No one is invincible, every day is a gift to each and everyone of us. Live. Love. Laugh 💙


Please follow Dylan’s Story on Facebook 

Dylan’s Story in connection with the Tree of Hope charity are in our second year of fundraising to build Dylan a safe and sterile sensory room he deserves. To donate Click here

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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 😴

  

Lucky Star 🌟⭐️🌟

It’s has just hit me as to why I haven’t been able to blog as frequently of late. 
  

Yesterday on Dolphin Ward whilst seeing Dylan’s paediatrician and discussing Dylan’s ongoing infectious diseases (throat and oesophageal tract infections) it occurred to me that we have no pending procedures under general anaesthetic due any time soon. Normally I’d get told that they’d look down his tubes whilst under GA but seen as Dylan has had almost every intrusive and inquisitive investigations in his almost six year little life there’s practically nothing else that can investigate into at present. 
So he needs his tubes looked into, also needs a dental examination both under GA but neither want to be done as a sole procedure. His knee will need operating on approximately at 7 years old we were told, but seen as Dylan’s legs are the length of a 9 month old baby that’s not gonna happen anytime soon  

  
So I should be able to take a breath and relax surely??? 

  
It approximately works out that’s he’s been put under for something or another at least once every two months of his existence. Wow. That’s a lot of sleep this child’s had (hehehe!!) 

So what I think I’m getting at is that it’s now boring…… Is that a correct thing to say?? 

 
We’re back to regular routine consultant appointments….

  • Rheumatology – happy that his inflammation is under control with both his daily steroids and his cytotoxic injections. 
  • Orthopaedic– can’t operate until he’s older
  • Endocrine – can’t help him grow 
  • Neurology – is flummoxed with the abnormalities they found on his scan last year 
  • Genetics – starting him on the 100k genome project in May 
  • Immunology – I’m giving him his regular infusions, but my boys IG levels are still dropping whilst on the drugs
  • Cardiology – regular reviews 
  • Gastro – at a stand still, although his reflux is back with a vengeance 
  • Respiratory– under review 
  • Optometrists– he WILL not wear his glasses
  • Dental – under review 
  • Along with 2 dozen therapists, community teams and local teams (all that’s missing is a partridge in a pear tree!!!) 

  

Is it boring that we have no ops pending?? Surely not. NO! This is my time to enjoy my little boy. Dylan ‘Peter Pan’ M. 

  

So I should count myself really really lucky, 

  • The Past – we’ve been through really tough times, touch and go at times 
  • The Future – we’ve got tougher times ahead I know 
  • The Present – we have a happy amazing little boy who simply put, is my baby, he doesn’t sit still, he’s constantly on the go 24/7, he’s obsessed with his car tights and Adidas hoody, he handles pain amazingly, he takes everything that’s thrown at him in his stride, he’s never angry. As long as he’s got his Birdseye Potato Waffles or Mcdonalds chips along with his orange flavoured Fruit Shoot and shock horror a brand new addition to his food regime Teeth and Lip sweeties he’s happy as Larry (who is this Larry??) 

In Dylan’s world it’s a happy place. I’d happily swap places and live in Dylan’s world. It seems a lot nicer place than Mummy’s world. He’s a lot happier there than I am in my world. 
I am so Lucky as I have Dylan 24/7. We do everything together. He is my world and he makes my world perfect. 
So for now I’m going to be thankful of the time we have away from being an in-patient (which has turned into being the norm for us), and enjoy every second of normal life, well normal-ish!?!?

Dylan’s my bowl of #luckycharms 💙💙

 

Keeeeeeeep Blogging….. (Ps Dylan you’re my favourite!) 

  
Our busiest, most productive and healthiest filled to the brim festive period is over with thank goodness nothing bad to report. 
  

Amazingly 2015 was Dylan’s 6th Christmas, not so amazingly he still didn’t have any understanding of meaning or the excitement but he enjoyed it. He enjoyed our manic two weeks of constant fun with family, friends and Mickey.  


With all that go you’d think it’ll be time for us to settle into a quiet January….. Fear not, January is where it all starts again. For on the final and 12th day of Christmas Dylan ended up in A&E, a little blip but Dylan makes sure he keeps us on our toes. Putting his mark firmly on 2016. 

Hot topic of conversation in the blogging community so far this year is about a blog about us special needs parents blogging. In so many words it’s a blog about how *’we‘ manipulate our children by blogging about them without their consent and do it for attention. #itsnotusattentionseeking #crippingthemighty #bloggoff (Dylan’s daddy said)

I wholeheartedly am a mummy of a special needs child with a life limiting condition who has complex health issues and enjoys sharing my experiences. Quite frankly I want to shout about Dylan’s progress from the roof tops but I also like to share the not such good news. #raisingawareness #welcometomyworld  

 Why do it do it? 

  • I blog in hope that I raise awareness for undiagnosed children #undiagnosed
  • I blog so that other special needs parents read my blogs and  can relate to similar experiences. 
  • I blog to get ‘it’ off my chest so I can deal with whatever’s thrown at us next. 
  • I blog in hope that someone somewhere at the beginning of their journey that I am on sees some kind of light at the end of the long tunnel I am still in. #standstillinblackwalltunnel
  • More importantly I blog to see if there is ‘another Dylan’ out there. I want to find him or a ‘Doctor’ that just might have an incline of an answer I hope might get in touch. 
  • But mostly I blog about experiences personal to me and my family.  

Most of us blog because we find it; therapeutic, informative and to raise awareness. We do not exploit our children, (perhaps if they were able-bodied and verbal we wouldn’t have a need to blog.) We only do it with every good intention and reasonings. 

I absolutely love reading others bloggers views on being a special needs parents, a lot of which I can relate to, empathise with and learn from. 

* I speak as ‘we‘ on behalf of the **SWAN bloggers community **I am so nervous but also so looking forward to the SWAN UK Bloggers Workshop later this month. It was be the first time in Dylan’s life I’ll be separated from him for over 24 hours. But that’s another blog. Watch this space. #excited #nervous #SWANUKbloggersworkshop

So what does 2016 have in store for Dylan’s Story?? Lots of visits to GOSH, Lots of blood tests. Physiotherapy, a new Speech Therapist, continued infusions, exciting new home education, SNAP, Haven House, SWAN meet ups and what ever else is thrown at us. 

Plus I’d love if 2016 is the year we get to take Dylan to Disney……. 

As for me I should have been in the circus;  Being a mummy, a wife, a carer, a daughter, a sister an auntie and a friend (not the best one at times I know) 

  • My job has no set hours.
  • No time off 
  • No holidays
  • No sick pay
  • No lunch breaks. 

  
 

    My Job requirements to be a special needs parent require; 

    • A willingness to be available constantly. 
    • Responsibilities include availability to work under immense pressure; 
    • sleep deprivation, 
    • putting my child’s needs before my own, 
    • Provide around the clock care
    • Intake of humungous amounts of caffeine… 
    • Being a real life superhero! 

      

      Role concists of being a;

      • Play therapist, 
      • Physiotherapist, 
      • Occupational Therapist,
      • Speech Therapist,
      • GP,
      • Pharmacist,
      • PA,
      • Nurse,
      • Teacher
      • Chauffeur, 
      • Carer, 
      • His eyes,
      • His ears,
      • His voice 

      Length of contract

      • Ongoing – please g-d forever

      Hours of work; 

      • 24 hours a day 8 days a week.

      Salary

      • £50 odd a week Carers Allowance!  

      Quitting is nonnegotiable.

        

      I take it all in my stride but I don’t claim that it’s the easiest job I’ve ever had. 

      Along with managing my daughters busy social life, running the home, cooking, cleaning, ironing etc. etc. etc.  

      I wouldn’t change a single thing.

      So now dare tell me not to blog about my life, my family and my special son. 

       I have been blessed. 2016; please make it a good one for my Dylan, my superhero. 

        
       

      You are my sunshine ☀️


      Greetings from Sunny Spain……. The perfect weather when holidaying with an extremely complex child. It’s in the 70’s, a bit cloudy, a bit windy and a bit wet…. Perfect weather for Dylan!! Holidaying with a Special Needs child late October seems to be the way forward.

      Whilst most children live for going on family holidays it can be extremely stressful for a child with complex health issues, learning disabilities and very limited understanding to explain where you are going and what’s going to happen. Especially when the child is Dylan who loves being at home. The disruption of his routine, sights, smells and home environment is enough unsettle him for the entire time we are away.

      Like many, holidays are a chance for the whole family to spend quality time together. But for us, away from hospitals, doctors, endless appointments and most importantly it’s about ‘making memories’

      It can be hard keeping everyone happy. You see, Dylan has never before liked the heat, the water, has never experienced the sea, only eats certain foods and has sensory issues. So holidays for us have always been a challenge
      Preparing with pictures……….……. As part of Dylan’s Home Education we use a Photo-Book as a way of communicating. So in the lead up to our holiday we used this to prepare Dylan for what’s in store. A picture of an aeroplane in a blue sky to Dylan was thought to be a “ba” (translated; bath (blue water) a Swimming Pool again was a ‘ba’, not a bad understanding eh! The beach was recognisable to Dylan as a ‘ba’ (just the sea). You get the picture. As far as Dylan understood we were having a bath!!

      I tried explaining about the aeroplane to Dylan. “It’s like a big taxi in the sky“. It was hit or miss whether Dylan pointed to the sky with me when discussing it but the bit I know he understood was taxi.

      Dylan’s Grandpa is a London Black-Taxi Driver and Dylan has found a true love ❤️ for being chauffeured around in Grandpas taxi, he absolutely loves it and recognises them going past calling them a “nana” (as Dylan is catagorised as non-verbal he can’t say grandpa or taxi so it’s the next best thing to call it) Dylan squeals with laughter & giggles & then laughs some more. So you can imagine the pleasure it gives his Grandpa to drive him round after his hard day at work!

      So, so far we are having a bath in a taxi!!!

      But did Dylan know something was happening? I’m not so sure.

      So the general consensus is to plan ahead. Giving a special needs child a visual concept of what’s in store, preparing them what to expect – preparation is the key.

      Dylan loved the aeroplane. After long discussions with Ryan Air via our wonderful travel agents ‘Travel By Inspire’ who deserve a mention in my blog as Nikki, Michaela and Lyndsey couldn’t have done more for us in arranging our flights,  all that goes with travelling abroad with a sick child and taking the huge load from myself. Thank you.
      Another HUMUNGOUS THANK YOU  to Richards friend Barry for letting us stay in his amazing apartment. An extremely kind gesture for which we are so thankful for. As for Lloyd, we won’t mention the car hire company……haha!!

      So with a folder filled with medical notes & a suitcase filled to the brim with medication we were on our way, only to be delayed by a full on security check at Stanstead Airport checking every single bottle of suspension and nearly losing 2 iPads. So, with a hungry wingey child in tow, Scarlett, not Dylan! we were ready to fly.

      Special Assistance were fantastic at the Stanstead and we were greeted at Malaga Airport by a man with a wheelchair ready to escort Dylan.
      Dylan didn’t really understand the aeroplane but being a night flight we have him his sleeping meds which actually worked. Well at the time of descent it did!!!

      After tooing & frowing with the airline as to whether our “5 year old baby” should sit on his own chair or on my lap. We decided to sit Dylan on his own booster seat on the plane which he sat for the duration as good as gold – Familiarity is key.

      I think he thought we were in a taxi of sort?

      Dylan settled into the apartment extremely well, finding his way around and making himself at home. He’s had a couple of bad days feeling poorly but a dose of meds and a mummy cuddle & he’s picked himself up. He is such a strong boy. Not much gets our special boy down.

      He is having the time of his life playing with daddy. Dylan loves sitting on the side of the pool with daddy splashing his feet. The water’s cold but that doesn’t stop my gorgeous boys having fun and daddy got so much pleasure being part of Dylan’s first happy experience in a swimming pool.

      Another first experience was on the sand. Being that it’s not too hot, Dylan was able to sit on the sand with daddy and Scarlett, feel it between his fingers and toes and help them build a sandcastle. We were all a little bit confused when Dylan used the rake as a hairbrush – but that’s our boy!!! full of sand and giggles. If only I could bottle it, it’s a magical sound. #sensoryoverload #messy

      I’ve learnt on our long hard journey there are different types of people in this world but when you meet a genuinely nice person, especially when they find out about the health condition of your child, you will remember it for a long long time.

      The waitress who served us ‘Peggottys Fish n Chip’ restaurant offered to go, on her day off to ‘Iceland’ in Marbella to get Dylan Orange Fruitshoots. Thanks Jill, I know Dylan would have dehydrated without them.

      Also to Jacky who made such a fuss over our Dylan every time we dined there.

      Now we are nearing the end of our holiday, it’s like being in a bubble. Quality family time together as a four is rare with such hectic schedules, hospitals, schools, work….. so we cherish every second of our lovely family time together. Reality starts again when we are home; doctors appointments, Great Ormond Street Hospital, Therapists, Injections, Infusions and so on.
      But for now we are going to enjoy every second.

      #makingmemories

      Every little thing he does is magic….. 🃏💔

        

      Before I start, please understand I am writing this as if it is a ‘story’ and not like it’s my real-life – really happening to us, to me, to my little boy. 

      Maybe it’s shock, maybe it’s denial, maybe it’s because I don’t want to believe it, which ever way I look at it it hurts like hell. 

      I reckon, after almost 5 years in and out of hospitals mostly Great Ormond Street Hospital for Sick Children I’ve come to terms with the fact I have a ‘special’ child, special needs, disabled, sick. I have finally accepted it. No he is not a baby anymore, although to look at him you’d think he was, not obviously dismorpic, He is simply an almost 5 year old in a baby’s body, he resembles a 9-12 month old baby on the outside. He’s my baby and always will be. But on the inside almost every part of him is under a different consultant. 

      • Neurology, 
      • Optometry, 
      • Audiology, 
      • ENT, 
      • Dental & M…., 
      • Respiratory, 
      • Cardiology, 
      • Gastroenterology, 
      • Rheumatology, 
      • Orthopaedics, 
      • Immunology,
      • Endocrinology 

        

      Without even mentioning all the Therapists, Clinical Nurse Specialists, Local Pead’s, Community Pead’s & Community Nurses, Special Education Workers, and his lovely Family Support Workers at SNAP (Special Needs & Parents) and finally (I think?? Could be more!!) The care Team at Haven House Children’s Hospice. 

      Dylan certainly is a popular boy. Everyone wants a piece of him. No wonder my very retro! Filofax is too busy and I have to book Nana in for 3 weeks on Tuesday – ops!

        

      Being Dylan’s EA. (Executive Assistant!), I was a PA. but he promoted me wahoo, it’s the only promotion I’ve had without being given a Pay increase, saying that it’s the only job I’ve had I’ve done out of love, not forgetting being Scarlett’s mummy too! She too needs a PA, taxi driver, cash machine, chef, personal shopper but that’s just part and parcel of being a mummy isn’t it? I much prefer being Dylan’s EA as opposed to his carer. Makes us both sound much more important lol! 

        

      Let me tell you if I don’t laugh about I will cry and simply not stop…….

      So at the moment we are having a break from his media appearances so his appointments have stepped up. Back and forth almost everyday with one appointment or another. 

      But the one that’s changed all our lives is the frank and open conversation myself and Rich had with Dylan’s endocrinologist a couple of weeks back. There’s only a handful of people who can experience hurt like it & no one could have prepared us for ‘this’ conversation. 

      For those who dont know what an Endocrinologist is, and let me assure you I didn’t know what any of these doctors specialised in let alone pronounce or even spell the words. “An Endocrinologist is a doctor that specialises in Endocrinology. It is a specialty of medicine; some would say a sub-specialty of internal medicine, which deals with the diagnosis and treatment of diseases related to hormones. Endocrinology covers such human functions as the coordination of metabolism, respiration, reproduction, sensory perception, and movement.” 

       

      As you may know, Dylan doesn’t grow very much at all. It all started when I was 27 weeks pregnant with him. I was so happy I had just had an amazing sizing scan and seen his gorgeous little face only to be told “he’s not growing, he’s getting smaller, he’s probably got a genetic condition which you won’t find out until he is born, GOOD-BYE”………. 

        

      Dylan’s never grown much, nor put on weight since birth, but the Endocrinologist looks at his growth or non-growth in this case. Late last year, after careful consideration and long discussions, we put Dylan through many tests, under General Aneathetics, inserted new Hickman Lines, 12 hours solid of 20 minute blood tests only to be told that Growth Hormone replacement is simply not an option as the side effects could basically kill him, shorten his life immensely, reduce his quality of life…….. So me and Rich simply said “NO” in unison and that was that. The drug we were holding out most hope for since he was 12 months old just shut the door in our faces. Gutted. But relieved to know the side affects before starting any treatment.

      In the last 6 months between appointments Dylan has grown an impressive millimetre. One and a half centimetres in the last 18 months. You get the picture…….

        

      So when we are confronted with the consultant standing over us in a small consulting room with one hand on his hips and one leaning up on the wall telling us there is nothing he can do to ‘make Dylan grow’ and given us, in the most open and upfront conversation I’ve ever had, with the room literary closing in on us, not able to stop the tears from falling and finding it hard to catch a breath; Dylan’s life expectancy………… 

      He simply doesn’t think my little boy will be here forever. 

      • Crushed 💔
      • Devastated 💔
      • Heartbroken 💔
      • Dumbfounded 💔 
      • Hurting 💔
      • Denial 💔
      • Overwhelmed 💔
      • Feeling Hopeless 💔  
      • Refuse to believe 💔
      • Horrific 💔
      • Terribly sad 💔

        

      As I write these words they mean nothing. I am emotionless.  There are no words to describe how I feel. 

      As I look at my beautiful little boy today whilst sitting here writing this blog , making a mess with his toys, eating hoola hoops and watching Mickey Mouse Clubhouse as happy as can be and having a really good ‘well day’. Trying so so hard at everything he does. Wanting to walk. Wanting to talk. Voicing his own opinion non-verbally of course!. Having his own little amazing personality. Developing at his own speed. So gorgeous and loving and simply adorable. 

        

      I refuse to believe. 

      We know the reason Dylan is here today is from our pure determination and our love and devotion to him. This care and love has got him through the bad times and he’s got more fight in him than anyone I know. And he has got us through the bad times. Together we are a perfect little family. Mummy, Daddy, Big Sister & Dylan

      Thank goodness the prognosis isn’t imminent and I pray that medicine improves and something can help Dylan prolong his life. As although his quality of life is limited he loves his little life and we love him. 

      Every little thing he does is magic!! 

       

      If any doctors out there read this and feel they’d like to help our ‘5 year old baby‘ please feel free to contact us. We would love to hear from you. 

      But for now.💙 Please huggle your little ones tightly. 💙 Live for today. 💙 Every moment is so so special. 💙

      Dylan’s loving mummy xx