We have worked with a number of very special families in the development of this information portal – special because they have all been generous enough to share their Kawasaki Disease experiences on camera, so that you can hear directly from other families who like yours, have been affected by Kawasaki Disease.
It is our shared hope that, in creating these films of family experiences, we both raise awareness of Kawasaki Disease and help families who are dealing with a diagnosis to make a ‘virtual’ connection with a few of the many, many others who have been through their own unique Kawasaki Disease journey. We hope that by making this connection to shared experiences, each story also brings hope to those newly affected, inspiration and an insight into what the continuing journey for families affected by Kawasaki Disease might hold.
Thank you to each of our ‘film stars’ – your contribution in sharing your story will help grow understanding, awareness and knowledge about Kawasaki Disease. We are also deeply grateful to the Kawasaki Support Group KSSG, who provided funding for these films to be created. Thanks must go too, to the families who have donated generously to KSSG over time. Without this support, sharing these valuable films would not have been possible. Find out more about the support group here.
Derek and Brandon’s Story
As a doctor, Derek was able to recognise the symptoms of Kawasaki Disease in his son, Brandon. This meant that Brandon received an early diagnosis and was treated quickly – something which is very important in reducing the risk of heart damage in children with Kawasaki Disease.
Kate and Jack’s Story
Despite being in hospital for two weeks, Kate’s son, Jack was not treated for Kawasaki Disease until day 14 of his illness – his doctors were unfamiliar with Kawasaki Disease. Whilst a diagnosis of Kawasaki Disease was later made and initially a relief, this was short lived as serious heart damage was quickly then confirmed. Kate explains what this means to them as a family.
Carol and Isabelle’s Story
Carol explains what happened when her daughter Isabelle became ill with Kawasaki Disease. Carol describes how Isabelle’s symptoms came not all at once, but one after the other, making her diagnosis difficult. Carol talks about some of the challenging issues they faced as a family after their diagnosis.
Debbie and Ethan’s Story
Debbie’s son, Ethan was 10 years old when he was diagnosed with Kawasaki Disease. 75% of patients with Kawasaki Disease are under 5, however Kawasaki Disease can affect older children and adults too. Debbie shares her experiences of Kawasaki Disease affecting her family – and gives valuable advice for parents.
Anthony & Nina’s Story
Anthony talks about Nina’s Kawasaki Disease, which went undiagnosed for 16 days. As a result of Kawasaki Disease, Nina now lives with a coronary artery aneurysm. Anthony speaks passionately about the need for everyone to know the symptoms and THINK Kawasaki Disease.
Neeta and Neeyan’s Story
Neeta describes the many problems her family faced when her son, Neeyan was diagnosed with Kawasaki Disease. Neeta also talks about issues such as behavioural problems that have occurred since Neeyan’s diagnosis.
Gary and Jamie’s Stories
As children, both Jamie and Gary were diagnosed with Kawasaki Disease. Now adults, they describe brilliantly some of the issues they have dealt with and explain how their lives have been affected by Kawasaki Disease.