Tyler’s journey kawasaki Disease

sarah m batemanI feel extremely selfish doing this but when it comes to your children, you want the best for them. I no theres people who are doing life alot harder and there’s nothing worse than being asked for donations but PLEASE help me in putting a smile on my little mans face and help get him back on the footy ground and doing what he loves.

DONATE Today: https://www.gofundme.com/Tylogs

Its April 24th 2016 my little mans 10th Birthday, he played 2 games of football in the morning, under 11’s and captained the under 10’s to a win, anyone who knows Tyler would no he lives and breaths sport and loves his footy. He would be one of the most active kids you can come across.
Later in the day after having family over for dinner Tyler said “mum I’m exhausted” I was a bit concerned how he suddenly dropped. I said just lay down mate, its been a long day, then Tyler starting complaining his feet were itchy and burning, I had a look and thought maybe a heat rash so i put some cream and ice pack on. The next day he badly went down hill, vomiting, lethargic rash spread to his tummy, temp was sky high. Took him to the doctor, its viral they said and should improve in a couple of days.

DONATE Today: https://www.gofundme.com/Tylogs

It didn’t improve it got worse.

On day 5 after 3 doctor visits we ended up at hospital, I refused to believe he just had a virus, his temp was still sky high, rash continued to spread over his whole body, lips were terrible and his hands and feet were swollen and inflamed, wasnt eating or drinking. They ran tests and his CRP markers were 128, should be 5, systolic heart mumur, enterovirus, rhinovirus aswell as other issues. They had him on a drip for a couple of days then re done his bloods as temp and more symptoms continued, on day 8 they officially diagnosed Kawasaki Disease and told me it is very rare for his age and if he was under 5 on the day we went in they would have diagnosed then and there, there was an immediate rush on the IVIG and echocardiogram, after another couple of days we came home, over the next few weeks the skin on his hands, feet and head  just peeling off, he gets a lot of pain in his head and seems to be bruising easily. Echocardiogram showed ascending aortic dilation and he has been on asprin since being in hospital, his next scan is Thursday 16th June then the Paediatric Cardiologist Thursday 23rd June. It is heartbreaking seeing him so lethargic and constantly tired, his not allowed to do any sports or be active, we cancelled his 10th birthday party, cancelled school camp, cancelled school sports. last week’s blood show high white cells, last 2 days rash has started around his neck and chest, lymphnodes popping up again. The peeling/shedding of his skin is still on his hands and feet. no one can give me any answers.

DONATE Today: https://www.gofundme.com/Tylogs

Kawasaki Disease is rare! I am so thankful I trusted my instincts and we got Tyler the appropriate treatment within the first 10 days and hopefully there’s no long term damage done to his heart.
It is a day by day thing at the moment.
I thank you from the bottom of my heart. if your unable to donate please share and spread the word!!
Donations will go towards Tyler’s ‘wish list’ and possibly a dog/puppy as a form of therapy that has been suggested.

DONATE Today: https://www.gofundme.com/Tylogs

One Comment

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