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.
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.
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.
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.
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.
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.