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Kawasaki Survivors' Stories
"Thanks for visiting this page. I am glad to share my daughter, Nadia's story with you all. This is how our journey began with Kawasaki Disease UK."                     
                                                                                                            

~ Dee Izmail

Kawasaki Disease survivors

Nadia's Story

To have been misdiagnosed before damage to my coronary arteries took place due to KD, infants like me who develop KD at an age younger than 1 are usually the most seriously ill and at greatest risk of long-term heart problems.

 

I was only seven months old. My condition was escalating at speed, and my parents were told that I had a common flu virus which could be cleared with antibiotics. My parents realized something was wrong when no recovery became evident. On our fourth visit to the paediatricians, it was then that a South African nurse happened to recognize the classic symptoms of KD having seen it in his home country. I was treated with immunoglobulin also called gamma globulin, a blood product containing antibodies, along with aspirin for two years.

If I remained undiagnosed I would have had heart disease in adult life and limitations to the things I do each day. The cause remains unknown. Researchers believe the disease may be an immune response to an acute infectious illness based in part on genetic susceptibilities. My aim is to continue to help promote awareness with my Mum and raise funds that will aid KD research.

Kawasaki Disease Survivor Nadia took part in KD research at Imperial College London

Above: Kawasaki survivor Nadia took part in KD research at Imperial College London, previously held at Great Ormond Street Hospital where she was diagnosed.

Caleb's Story

Caleb is 17 months old and was 10 weeks premature. We have dealt with numerous inpatient stays for his chronic lung disease but had no idea how devastating watching him become so poorly with KD would be. My son was diagnosed with Kawasaki Disease on the 18th of November 2022. 

 

"We first took Caleb to hospital on the 18th of November when his BCG scar reactivated (a whole year after receiving his BCG immunisation) coupled with a temperature of 41 degrees, that would not stay down despite regular paracetamol and ibuprofen. The doctor in Paediatric A&E first mentioned Kawasaki's to us as a potential, but unlikely diagnosis, as it was the only other time he had seen a BCG scar re-activate. Whilst we were waiting in A&E Caleb had also begun to develop a blanching rash over his face that spread quickly over his torso too. We were sent home after being told it was probably a viral infection but were given red flags of other Kawasaki symptoms to look out for if Caleb deteriorated. I truly believe this A&E doctor potentially saved my son's life and enabled him to get treatment quickly as we knew exactly what to look out for.

 

Over the next three days, Caleb became a textbook case study of Kawasaki. His fever wouldn't budge, he had a rash all over his body, his eyes were dreadfully blood shot, his lips and tongue were blood red and his hands and feet were swollen. We spent fifteen hours in A&E at Croydon University Hospital where they liased in real-time with The Evalena Children's Hospital in London to determine a disease pathway as the hospital hadn't seen such a serious case like ours before.

 

On the morning of the 21st of November Caleb received IVIG treatment, four days after first showing signs of KD. We were told that catching it so quickly could hopefully prevent known heart problems that crop up due to Kawasaki's and that we had done entirely the right thing by bringing him back in when his symptoms worsened. The change in Caleb mere hours after receiving IVIG were incredible, and let us know treatment was actually working.

 

Caleb spent 5 days in hospital, and is still being treated with aspirin and omeprazole to hopefully limit the danger of heart issues moving forward. So far, we have had two heart scans and Caleb will have a more in depth scan in January and has a specialist follow up appointment then too. We are (hopefully) out of the woods in terms of aneurysm, but he will continue to be monitored to ensure that any heart disease is picked up and treated promptly.

Financially, KD has ruined us. We are SO lucky our son received life saving treatment during his hospital stay.

"Financially, KD has ruined us" - Ella 

Kawasaki Disease UK was able to donate £500 to the family to help with their financial situation during the Christmas period.

William's Story

“Undoubtedly, without the advice myself and my GP received we would not have got William the care and treatment he needed before his situation got worse”...

KD UK was contacted by a GP through our enquiries form on our website. They suspected Kawasaki Disease in one of their patients due to his high fever and lymph node swelling and was looking for more information in order to best care for them. The mother, Mrs Hutchinson, was told it was possibly Kawasaki Disease, but later told that this was ruled out, meanwhile his symptoms progressed. She also contacted us, seeking further information, advice and support; we were able to help. The GP was referred to Professor Michael Levin who was able to advise them and ultimately a diagnosis of Kawasaki Disease was given. The child, William, was admitted into hospital. This meant that treatment for KD was able to start and he began to improve. Luckily, despite the delay in treatment, they did not develop heart complications. We here at KD UK are very grateful that we were able to assist the GP and the mother in the care that William deserved. As she says, “undoubtedly, without the advice myself and my GP received we would not have got William the care and treatment he needed before his situation got worse.” “The advice we received has proved to be invaluable in ensuring our boy is healthy and recovered.” We encourage every parent or healthcare professional to get in touch with us if you have concerns over a child’s health.

Isaiah's Story

"Isaiah is a very brave 12 year old Kawasaki disease survivor. Living with multiple coronary aneurysms. Underwent double bypass surgery at age 4." said Isaiah's mother. 

Kawasaki Disease survivors Isaiah underwent double bypass surgery at age 4

Please like and share Facebook page of @IsaiahsKDJourney, another KD fighter as explained by parent.

Kawasaki Disease Fighter, Sarah Demastus had high fever at 4 years old

Sarah's Demastus's Story

"I thought these cases were so rare...I never imagined that my baby would be one of them.

We were there at the hospital. My daughter, who had just turned four months old, was being admitted for a strange rash; not eating; vomiting; a mild cough; and

a high fever." said Mrs D.

Kawasaki Disease Fighter, Sarah Demastus suffered from strange rash, not eating, etc at at 4 years old
Kawasaki Disease Fighter, Sarah Demastus suffered from strange rasg and vomit at at 4 years old

Please like and share her Blog Page, another KD survivor as explained by parent.

Louise's Canterbury Half Marathon to support our fund

Kawasaki Disease

"At 9 weeks of age, Louise's daughter, Pippa was admitted to hospital with what we thought was a common childhood illness. After 18 days Pippa was transferred to St Mary’s in London with Kawasaki disease. At such a young age Pippa was our miracle baby. The treatment she was given was so harsh but she has battled through everything, at times rewarding us with smiles and laughter. Due to the late diagnosis Pippa has 2 large aneurysms and will now face a totally different lifestyle due to life long heart damage." said Louise. 

Click and learn more about the fund raising initative

https://www.justgiving.com/fundraising/louise-odonnell7

Harriet Hutchsinon Testimonial

My GP called yourselves after I had spoken to Sue from the Kawasaki Society Support Group. She was given great advice and contact details that enabled her to get William seen at a Children's hospital who took our situation seriously and were happy to admit him and start treatment following an assessment. Undoubtedly, without the advice myself and my GP received we would not have got William the care and treatment he needed before his situation got worse. The advice we received has proved to be invaluable in ensuring our boy is healthy and recovered. I would definitely recommend parents to get in touch, as I said I just don't know where we'd be if we hadn't. - Harriet hutchinson

 

Written Testimonial from facts Good quotes to use: - “Undoubtedly, without the advice myself and my GP received we would not have got William the care and treatment he needed before his situation got worse” - “The advice we received has proved to be invaluable in ensuring our boy is healthy and recovered.” - “I would definitely recommend parents to get in touch” - “I just don't know where we'd be if we hadn't.”

 

D UK was contacted by a GP through our enquiries form on our website. They suspected Kawasaki Disease in one of their patients due to his high fever and lymph node swelling and was looking for more information in order to best care for them. The mother, Mrs Hutchinson, was told it was possibly Kawasaki Disease, but later told that this was ruled out, meanwhile his symptoms progressed. She also contacted us, seeking further information, advice and support; we were able to help. The GP was referred to Professor Michael Levin who was able to advise them and ultimately a diagnosis of Kawasaki Disease was given. The child, William, was admitted into hospital. This meant that treatment for KD was able to start and he began to improve. Luckily, despite the delay in treatment, they did not develop heart complications. We here at KD UK are very grateful that we were able to assist the GP and the mother in the care that William deserved. As she says, “undoubtedly, without the advice myself and my GP received we would not have got William the care and treatment he needed before his situation got worse.” “The advice we received has proved to be invaluable in ensuring our boy is healthy and recovered.” We encourage every parent or healthcare professional to get in touch with us if you have concerns over a child’s health.

Timeline of illness for William Hutchinson

Sunday 3rd July – Loss of appetite, temperature.

Monday 4th July – Consistent temperature when due paracetamol, still no appetite and struggling with fluids. Very tired. Sweaty. Stiffness in neck started late afternoon.

Tuesday 5th July – Symptoms as before, vomited twice in the early hours. No interest in food. Taken to Urgent Treatment Centre in Goole as stiffness in neck worse and unable to move his head without turning his full body. Obviously in a lot of pain and distressed. Very high temp when we got there, given paracetamol and ibuprofen. Obs taken and he was assessed. Told it could be tonsilitis and may need antibiotics, but none given. Advised to speak to GP if not happy. Not concerned about lack of movement in neck. Later that day, large, painful lump developed on the left side of his neck. Wouldn’t let me touch it. Stiffness in neck got worse. He didn’t sleep all night, he was screaming and crying. Very hot. Couldn’t get comfortable.

Wednesday 6th July – Symptoms as on previous days. Took him to see GP. She suggested possibly Mumps or Glandular fever, but both were unlikely. Advised to keep an eye on him and keep on top of meds as still getting a temp. No interest in food. No interest in playing or watching tv etc. Stiffness and lump on neck no better and still extremely painful for him. Complaining of sore throat. Very tired and cross.

Thursday 7th July – Much the same. Still spiking a temp. Hardly eating. No interest in anything. Couldn’t get comfortable as neck too painful.

Friday 8th July – Went back to GP who did obs, weight etc and then admitted to Hull Royal Infirmary PAU. They fitted a canula and did bloods and swabs and started him on co-amoxiclav while they waited for results. While on the assessment unit they did his obs every two hours and gave regular paracetamol. He was still getting a temp and very uncomfortable. Very tired. Still no appetite. He had bloodshot eyes and very dry, red, cracked lips. He had ‘strawberry’ tongue. We were moved to Children’s ward 130. We were told a Dr would be coming to see us from 6pm when the rounds started to discuss the blood results they had already received back. We had to ask for paracetamol 3 times as he was very distressed and hot. At 9pm we asked when the Dr would be speaking to us, and they said it would now be the morning. We asked why as we had been told someone was coming to see us that night. We were told they would get someone to speak to us if they could. At approx. 11pm a Dr came to see me and said they were not ruling out tonsilitis, but they were thinking it could be Kawasaki disease. No further information given but told consultant would speak to us again in the morning.

Saturday 9th July – William had obs and medication administered every 2-4 hours through the night so very unsettled. Still very uncomfortable. Still very hot. Really struggling with the pain in his neck and lack of movement. Consultant came and said they were still thinking Kawasaki disease. Would need to keep him in for a few days, would re-do bloods and do an ecg and echo. Would carry on with co-amoxiclav as a general antibiotic to cover him while they were still assessing him. We were told that it was a time sensitive condition and the first line treatment for Kawasaki disease needed to be administered within the first 10 days of symptoms starting, which we were still in as it was seven days from him starting with a temperature. Nurses did obs regularly, but we did have to chase paracetamol and antibiotics and I also asked if he could have anything else as he was so distressed and uncomfortable. A Dr came in to confirm that I had requested this and said she would sort something, but nothing was given until much later after asking again as I was struggling to calm him down, he was very upset – ibuprofen was given. He was unable to walk when we took him for a shower, he said his legs couldn’t work properly.

Sunday 10th July – Through the night William woke up wet through with sweat and – I assume – a very high temperature. I went to find a nurse to ask for paracetamol. I was given some, but no one came in to check his temperature. Obs were done less frequently through the night. When the consultant came in that morning, he said they would be removing his cannula and sending him home with antibiotics to finish orally as he was ‘clinically better’, although how he knew this, I am not sure as no one clinical had spent any time with him other than doing obs and administering medication. I questioned why he was going home as the last thing we had been told was that they were keeping him in to re-do bloods and scans etc. He said they had ruled out Kawasaki the previous day (no one had told us this) as he had not got worse, he would be more miserable and ill if it was that – he was extremely miserable and poorly. When the nurse came to remove the canula we said we were not happy for this to be done as no one had given us a diagnosis. A Dr came to see us and said he had Lymphadenitis and a viral infection. We were still unhappy to take him home as from what I could see he was no better than he was when he first got admitted. We were told if we had any concerns, or he wasn’t improving we could ring the ward and they would see him again without having to go to A&E. They removed the canula and we left. He couldn’t walk at all so I had to carry him. He screamed in the car until he fell asleep. He was very overwhelmed when we got home and unable to do anything for himself. He needed assistance lying down, sitting down, standing up etc. He still was not eating and we were struggling with fluids. He cried a lot saying his legs weren’t working and he didn’t know how to walk. He was getting very confused and upset saying he just wanted to go back home and not understanding when I told him that’s where we were. He was very unsettled through the night again. He still had a temperature that evening.

Monday 11th July – Much the same. Neck still sore, still no appetite. Still very wobbly on his legs and saying he didn’t know how to walk and his legs were sore. Very sad and cross.

Tuesday 12th July – As before. Neck had slightly better movement and lump looked to be going down a bit. Still no appetite. Sick four times from teatime and into the night, unable to keep paracetamol down so high temperature throughout the night.

Wednesday 13th July – Called Hull Royal as concerned about continuing temperature and vomiting. They said not a problem. Ring GP or go to A&E if worried. He started to pick up a little bit in himself. Kept on top of paracetamol, still taking antibiotics. Very hot, tired, and cross. Still not got much appetite. Less wobbly on legs but still not walking much.

Thursday 14th July – A little happier in himself. Still poorly but brighter than he had been. Temperature stable. Eating a bit more.

Friday 15th July – Our GP had arranged blood tests in Scunthorpe as they had not been repeated in Hull. I took him for those. Later that afternoon, I noticed the skin around his fingers was peeling. I rang Hull Royal Ward 130 as I was quite anxious given what I had read about Kawasaki disease, and they had told us to look out for this when he was in hospital the previous week. They told me to call back to the PAU instead. The Nurse I spoke to spoke to the registrar and told me if he was ok in himself, he was fine. She said he may have had Kawasaki disease at some point, but it sounded like he was ok now. After speaking to my Surgery, I was advised to ring the Kawasaki Society for further advice. I spoke to a lovely lady called Sue at the Kawasaki Syndrome Support Group. I told her the full timeline of events and she advised that it sounded like he definitely did have Kawasaki disease but given that he was now ok in himself and his fingers were peeling it was too late for the initial treatment of immunoglobulin, as despite what we had been told in Hull, once the initial fever stage of the condition was over you would not expect him to be ill in himself. She said that I needed to speak to my GP straight away to arrange for William to have an urgent echo and to be started on aspirin. After much ringing around various hospitals and speaking to Professor Levine in London, my GP managed to arrange for him to be seen in Sheffield that night, they were brilliant. They kept us in until the Saturday evening after confirming that, based on all the symptoms William had been experiencing over the previous two weeks (and given that Kawasaki can only be diagnosed through symptoms and not a test) he did have Kawasaki disease and they started him on Aspirin and Lansoprazole. They organised an urgent echo for the following morning. Luckily, this looked clear, and they have given us a follow up appointment for another echo and appointment with the cardiologist on the 23rd of August and told us to keep him on Aspirin and Lansoprazole daily until then. Sheffield advised us that they could not comment on the treatment he had received elsewhere but that we should contact PALS. We are very fortunate that we have a GP who listened to us and acted on things quickly to get us the urgent care he needed.

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