What a Difference a Day Makes

We did it Freya! We did what we set out to do, and marked your very first milestone with an event to remember.  I hope when you read this, you will forgive me and Daddy for sacrificing your 1st Birthday for Kawasaki Disease Research, and we hope that you will look  back and feel proud of the legacy that we created in your name.  Your first birthday was important to us in more ways than you could ever imagine.  It has been exactly 10 months today since you received a diagnosis of Kawasaki Disease when an echocardiogram (heart scan) showed us the damage to your heart.  Back then I was so afraid for you that I couldn’t see a future that spanned days, let alone months.  Celebrating your 1st birthday never occurred to me – I was focussing on what was happening right there and then and it didn’t look good sweetheart, it really didn’t.  I don’t think I gave up on you, but I did start to allow myself to believe that we might lose you to this disease because of the damage that it did to your heart.

On the 25th January 2016 I sent out an invite to an event on Facebook; Freya’s 1st Birthday Fundraiser for Kawasaki Disease Research.  It would be a birthday party with a twist. First of all, you have very few friends (to protect you from some nasty childhood bugs until you have been immunised against them, we’ve lived in quite a closed circle for the last year).  Instead I had to find you some friends, and so I invited all of my Facebook friends that have children, and a few without.  I intended to have a number of stalls at the party that would provide an opportunity for us to raise some funds for research into the disease, but also needed to make sure that it was a great party for you, and that everyone would enjoy it.  And we wanted to do a raffle too, so I set about contacting local (and not so local) businesses to ask if they would donate a raffle prize to support us.  Some didn’t reply, a few were unable to help, but lots of people were happy to provide some brilliant things for your raffle, and we ended up with a list of 82 amazing prizes with an iPad Air donated by Daddy’s work as the top prize!  I was overwhelmed by the support for the cause, and interest in the raffle was soon peaked.

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We hit a small stumbling block when a friend informed us that we had to obtain a license in order to sell raffle tickets before the event, but I leapt into action right away and made the application to the Local Authority who (with a little help from the Mayoress’ office) turned the application around quickly and our license was granted.  It delayed the process by about 4 weeks, but the license was received on my birthday, 26th February.  We then had to have special tickets printed, and we were very lucky that Hayselden Volkswagen, Doncaster, stepped up to offer the printing as their donation to our cause.  We received the raffle tickets in the middle of March – we had one month to sell as many as we could, and we needed to sell enough to do justice to the value of the prizes we had received.

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We needed to make sure the party was something for everyone to enjoy, so we engaged a local children’s entertainment business, Bumblezzz, to do balloon modelling, face painting, a magic show and party dances.  The husband and wife entertainers sadly lost a daughter to cancer, so it felt like they were the right people to use for your party; people who could empathise with our situation.

Your nanny offered to run a jewellery stall where children could make a bracelet to take home as a keepsake from your special day.  She also made some things to represent Kawasaki Disease awareness, including little crystal ‘Kawa-angels’ and sun-catchers in orange and red.  Her stall was a huge success and she raised over £120 on the day.

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People from the local area, and other people that we know, donated lots of things for a tombola.  We even had bottles of champagne, so it was a very posh one! We had so many things that we did one for the children, and one for the adults.  Both tables were absolutely full of things, and almost everything had gone in the first hour of the party!  Your cousins, Tegan and Amber and their friends took charge of the adult tombola, and our friend Louise and her daughter Izzy manned the kiddies one.  In total the tombola tables made over £250, which is amazing!

Some of our friends made cakes to sell at your party.  Jo and Lisa (and their family) made some beautiful cakes and scones.  The stars of the show were Linda and Tracey who made absolutely loads of beautiful things, and made the cake stall look fit for a princess!  They made over £165 selling the things that they donated, and I even got to try a scone with some jam and cream.

The local nursery donated a bear, but he didn’t have a name so the children needed to try and guess it.  He was eventually named “Harley” and raised nearly £40 towards our total.  Our friends Alison and Jo manned the stalls with a little help (well a lot actually) from Jake, who added another £20 to the total with the Guess the Sweets in the Jar competition.  Bonbon Delights donated their Sweet Cart laden with sweets which they sold, making over £20 to add to the total raised at your event too.

Your Granny, Auntie Catherine and Vicky did a sterling job in the kitchen making tea and coffee and soft drinks for everyone, and your Auntie Hayley sold over £230 worth of raffle tickets.  We even had an impromptu visit from an Air Ambulance medic who taught the children to perform CPR using his dummies; that was fantastic!

I’m not sure how many people came to your party, but it was very busy!  Nearly 100 people accepted the invite on Facebook, and they brought family and friends and their children too.  Your Granny and Auntie Nicola bought you a car for your present, which you loved zooming around in, and you even got to meet Queen Elsa (Millie’s Magical Parties) who came along for free to support the event.

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We had an awareness table where I shared a photo story of your journey from the day you were born up to now.  We asked people not to buy you birthday cards, but a lot did anyway and we have a dining room table covered with them!  But we did ask people to write a wish or a message on a paper heart which I will be putting into a scrap book for you with memories of the event.

Mummy’s work (Capita) held a bake sale at work where they raised over £185, and the local wine bar, Otto, sold cupcakes on Rare Disease Day, making a massive £120 in one day! They presented us with the cheque on Monday, and you even got a birthday cake from them to mark the occasion.

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I am overwhelmed by the love and support that we felt on Sunday.  It was one of the most special days I have had with you since you were born, and certainly since everything changed when KD entered our lives.  I cannot think of a better way to turn something so terrible into something good, and the awareness and money we raised at the event will hopefully go a long way to helping the researchers to uncover the mystery of this disease, even if we can’t change anything for you.

All of these things, along with the direct donations made by people who have been touched by your story (not including the huge £75,000 donation received by COSMIC in your honour), add up to a total of over £6500! Because everything we raised is being matched by the Macklin Foundation in America, that is worth £13,000 to the research effort.  And if we can be cheeky enough to add the donation from ‘a cool Italian Dad who lives in Hong Kong, you alone have inspired a total donation worth over £163,000 to research.  I am bursting with pride.  You have achieved more in your little life than most achieve in a lifetime, and I will be eternally in awe of your ability to touch hearts and to give Kawasaki Disease a voice that has been silent long enough.

Together we can move mountains.

 

 

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75,000 Reasons to be Thankful…

So Peanut, where do I start?  I guess a good place to start would be to thank you.  Thank you for coming into the world, despite all my efforts to ruin that.  I wasn’t sure that you were welcome in my life when I found out that you were coming along.  Some people might say I ought not to share that, but do you know what? I’m not afraid of my honesty, because I know that you will never, ever feel that you were not wanted.  So I wasn’t sure I was going to love you when you were growing inside me, not in those early months.  But towards the end, our bond began to grow, and when you arrived into the world, a tiny, purple, screeching thing, I knew that the past didn’t matter.  What mattered was that you were here, you were alive (yes, I was afraid of that), and that there was no question in my mind that I loved you at that moment, and that I would continue to love you for the rest of my life.

You were so precious, and I held you so tight I was afraid I would crush you.  But I had been on such a journey to get to that point with you that I had to feel you in my arms, really feel you.  Years ago, when your older sister and brother were born, babies seemed to be whisked off, the moment they arrived, for the all important weighing and measuring.  It seems the health service have learned a thing or two about bonding since then.  I remember saying over and over to the midwife, to your Auntie and your Daddy that were all there with me to share the moment when you burst into that delivery room, “Am I hurting her?”, “Am I holding her too tight?”  And they told me to relax, and I held you for the longest time, drinking every bit of you in.  I felt like I had been truly blessed.  Not in the glib clichéd sense, but actually blessed with a gift.  You were a sign.  A sign that proved to me that I was indeed a lucky person, and all the insecurities, fears and negativity I had held onto for so long were allowed to be set free.

In the early weeks, I took heed of all the advice I had been given and ignored with your siblings.  We didn’t go out of the house for weeks.  We spent our days cuddled up in the cosy corner of the sofa and got to know each other.  When you slept, so did I; the housework could wait.  And I didn’t feel any need to rush out to meet people or go places, because I wasn’t ready to share you with the world yet.  You were all mine, and I all yours.  There would be time for all that fun stuff later.  Had I known what would happen 7 weeks later, might I have done things differently?  No, I don’t think I would have.  In fact I am glad I made the choices that I did, because at least I got to have the perfect you all to myself for 7 blissful weeks.  Before…well you already know what happened next.

I am not going to dwell on the following weeks, on your illness, on your diagnosis or the effects that Kawasaki Disease have had on you.  By the time you read this we will have covered all that.  No, this letter is about thanks, so lets get back to the point shall we.

You truly are a remarkable little girl, Freya.  You have endured so much in your little life, and yet you have managed with a grace that shouldn’t even be possible at your age.  You have more courage than I have seen in people more than 20 years your senior.  Your heart, tiny by comparison, has the ability to love with more fervour than any adult I have met in my 41 years on this Earth.  You touched my heart in some magical way the moment you were born, and you have continued to touch the hearts of everyone who has encountered you since.  You have something special within your soul, that shines out like a beacon through those eyes.  Eyes that have both the power to haunt and to heal me.

You have taken everything your short life has thrown at you in your stride, before you are even able to walk a step! Even when you were critically ill and your eyes pleaded with me to help you, your little mouth worked so hard to form a smile.  And later, as you started to get stronger, you smiled for every nurse and every doctor that crossed your path.  And there were a lot!  You even managed to bowl the phlebotomists over when they came to take your blood.  You would cry for a moment, but once they had taken their fill, that smile would spread across your face like a sunbeam and I would see that you had made someone’s day.  Again.

Thank you for inspiring me to write.  Well, it was your Auntie who gave me the journal and the pen, but you were my muse.  I remember opening that book, and wondering where to start, and then I looked over at you in your cot and I knew you were scared and I had to tell you what was going on.  And so the letters began.  I didn’t give it too much thought after that; the letters just came, at the end of every day when you were sleeping.  I would write in the moonlit room, laid on the parent bed by the side of your cot.  Sometimes I would think about how you would learn all about those days, because I knew you wouldn’t remember them.  Often, it was a chance for me to keep a note of the facts as your story unfolded.  Sometimes, on particularly bad days sweetheart, I would wonder if I would ever get to share your story with you, and I wondered if I knew deep down that I could really be writing for myself.  But let’s not dwell on that, eh?

I knew your story was one that I needed to share.  It came from an intense need to make sure that you had not suffered in vain.  To walk away and do nothing would have made me feel like it was unimportant, and it felt too important for me to do that.  In every moment that I wrote through tears in my journal, I felt that there was another parent like me in a hospital room somewhere with their child; sad, scared and alone.  I felt alone.  I scoured the internet,  I contacted Doctors near and far, and I joined social media support groups searching for answers.  The thing is, you can find the basic answers for the typical cases, but your case was an atypical one in many ways.  Any answers I did get were like gold, and whilst I knew that the information I gathered in relation to your case would not be appropriate to generalise, I knew that I couldn’t hold onto them.

And so Freya’s Story began.  I resurrected this blog, and created your tag.  And then I created a Facebook page that would help me to broaden the audience for awareness.  I had a lot of catching up to do – I had written 40,000 words in that journal if I remember correctly! So I began the task of transferring those journal entries onto my blog, whilst updating on your current situation.  There are many other social media pages who are dedicated to raising awareness and keeping people like me informed on latest news and developments in the world of Kawasaki’s.  The various support group pages were great, but sometimes the updates about children who were continuing to experience health issues years after diagnosis would push me into a very dark place.  Sadly, that is the reality of the disease, I know that.  But I wanted to use your page to show people that there is #lifeafterkawasakis.  Of course the disease continues to blight our life.  You have continued complications with your heart that are still unknown.  In a couple of month’s time you will go into hospital for an invasive procedure to try and get some idea of what is going on.  So far, you look like a miracle kid.  But we need to look deeper to be sure.

Freya’s Story is about more than the disease though.  It is about a special little girl, who has the ability to inspire a mum to write; I always knew I had words in me, I was just lacking the inspiration.  It’s about a pair of eyes that have the power to lock with the reader’s through a screen and implore them to read your story.  It’s about flying in the face of adversity, seizing opportunities, loving life and having hope.  It’s a celebration of a little girl who will not allow some nasty bastard illness (sorry for the language but I get a bit angry at KD sometimes) to stand in her way.  You are not the Kawasaki Kid.  You are my marvel, and you surprise me every day.  I hope as you read this, all grown and proud of whatever you have achieved in your life, that you still cannot see the scars that KD left you with.  It is an invisible illness that shows itself for a while, then skulks back off into the shadows where it belongs.

I knew I had done the right thing as soon as the messages started coming in.  Ok, so Freya’s Story hasn’t exactly gone viral – let’s face it, Kawasaki Disease doesn’t have the same amount of clout as Meningitis, say, but it needs putting on the map, and you and I will help to put it there.  And anyway, if even just one parent feels less alone, or one child receives a swift diagnosis or the right treatment after reading our blog, then we achieved what we set out to.  We’ve had parents sending messages of hope, parents asking questions about medication, treatment, immunisations, all kinds of stuff.  I’ve had to be careful with my responses; I don’t have a medical degree (although I do sometimes feel like I have one in KD), so I have mainly signposted parents to useful social media pages, internet links, research papers, support groups and the like.  I have given words of comfort when they’ve been asked of me.  I’ve kept people up to date with how you are doing when they’ve contacted me to ask how you are.   We’ve been credited with helping parents get the treatment that they needed for their child, and helping some people through some lonely times.  I am sure there have been some doctors across the country muttering “Who is this Freya’s mother?!” But I have never claimed to know it all. I only know about you really.  But at least I have been able to provide information that has helped to inform discussion and provide a line of questioning that might previously have been more difficult for a parent to navigate.  Thank you for inspiring me to do that.

You might not thank me for it, but I am sacrificing your 1st Birthday to raise funds for Kawasaki Disease research.  Ever since I made contact with the Professor heading the research after we sent off our swabs for genetic testing, I knew I had to do something.  I had asked the Professor to show me a tangible offering for parents like me to donate to.  Something that would show us how we could contribute to the amazing opportunity that had been granted to Professor Jane Burns in the States.  He cemented the offering in a 2-page document with a link to the COSMIC Kawasaki Disease Research Fund campaign on the Virgin Money Giving site, and I shared it with the Kawasaki community back in November last year.  Once I had a willing recipient, I could concentrate on bringing in some funds – no matter how small our contribution might be, the Professor had assured me it would be worthwhile and gratefully received.  And so the idea of turning your birthday party into a fundraiser was born.  I’ll tell you another time about those details, but for now, I want to thank you for forgiving me for giving up your birthday for Kawasaki Disease.  I have promised that I will not steal any more birthdays from you.

There are so many people to thank for their contribution to your birthday party, and it’s not for another 6 weeks! I will make sure I cover that when I blog about your event.  From local businesses donating prizes to entertainers offering free services, we’ve had a huge amount of support.  The local press have followed your story since we first approached them to help us raise awareness after you came home.  We’ve had cupcakes sold in your honour, and cash donations have started to hit the Virgin Money page.

And then there was this one thing, that started with a Tweet.  

Twitter and I are kind of new friends.  I set up your Twitter account not really knowing what I was going to do with it.  I still don’t really, but I dabble here and there and started to share your blogs when I’d worked out how to!  I mainly use it to hound celebrities in an attempt to increase the reach of your story and shine the spotlight on Kawasaki Disease.  I have had some successes; some of the key KD and Rare Disease organisations follow Freya’s Story.  We’ve had retweets from some celebrity Doctors, like Dr Miriam Stoppard and Dr David Bull.  One of the stars of TOWIE retweeted once, and we’ve had a couple from actresses and directors.  We set out on a bit of a challenge with a Kawadad from the other end of the country, (you know who you are!) but he has had more success than we have, lol!  I have a lot to learn about Twitter it would seem.

But, somewhere, on one sleepless night during their own Kawasaki ordeal, it would seem that the right person stumbled across your story.  They saw that we were raising money for the Kawasaki Research Collaboration between Imperial College London and Rady Children’s Hospital in San Diego.  And that person did a remarkable thing;

“…managed to get…some funding for research. 75 thousand pounds…”

Even though I’ve had that information for a couple of days now, I still struggle to let that sink in.  I think my response was something like “Are you serious? How is that even possible?!” which was met with a reply about the world not being all bad.

I received an e-mail from the charity too, but I still didn’t quite believe it Peanut.  How could we have inspired such a huge donation?   But it is true.  And if the donation can be counted towards the collaboration pot, it will be doubled. Meaning that single investment in research is worth £150,000!!

“…you may want to thank someone who raised awareness about the KD research thru her twitter activity: I found you guys late at night reading the posts from a @freya_story” 

Thank you for giving me a story to tell.  Whilst I would have given anything to have prevented you from going through this, I can take comfort in the fact that because this happened to you, great things might happen.  No amount of raising of awareness or funds will change what happened to our family 8 months ago.  The emotional scars will take a long time, perhaps forever, to heal.  What I hope it will do, what every parent who has experienced this with their child hopes, is that the research being undertaken now will change the future of Kawasaki Disease and the lives that it lays claim to.

I’m going to leave you with these lovely words, received from Ilsen Cafer (Fundraising Co-ordinator for COSMIC – Children of St Mary’s Intensive Care);

…You deserve to be very, very proud.  I can’t imagine how tough a time it must have been for you and your family when Freya was diagnosed, but your special little girl, her story and your courage have helped lots of parents, as well as inspired a donation which will make a difference to the lives of Kawasaki patients around the world.  Never underestimate the impact of your story, you’re doing a fantastic job!” 

“…Please tell Freya in her letter that she is our little COSMIC star and that she should be very proud that aged only 1 she has inspired so much more than most people ever do!”

It seems that I have so many people to thank, and so much to be thankful for, despite this terrible experience that we have all been through at the hands of this disease.  Most of all though, I have to thank you for being you.  You have got us through this.  You.

And then there’s one person whom I would like to be able to thank 75,000 times, and that is one very cool Italian dad who lives in Hong Kong.  Thank you from the bottom of our hearts.

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