Cooper's Story with Kawasaki Disease

8 yr. old Cooper and parents discuss living with the effects of Kawasaki Disease. KD is the #1 squired heart disease in young children 0-5 years of age. Cooper wants everyone to know the symptoms of this disease. #bravekids #stronghearts

[@MJSmith216]

I applaud you guys for starting this foundation as it is very much needed. I am currently in nursing school and I am doing a report on Kawasaki disease. I always choose it as a topic because very little people know about it. My son was diagnosed when he was four. He is now 18. His pediatrician kept telling me it was strep throat. I took him to our local Children's ER because his symptoms weren't improving. Thankfully he was diagnosed before the 10 day mark. Very scary experience. He was cleared for any heart damage but I still get concerned from time to time. I will continue to be an advocate for the disease. Again, thank you for all that you've done!

[@djlilcoop]

It's our pleasure. I hope your son is doing well. - Cooper's dad

[@sharonroberts3397]

PRAYERS TO YOU ALL. BE STRONG GOD IS WITH YOU

[@yixintan9293]

my 2 yrs old son was diagnosed with kawasaki at the 2nd day of him being fired up by high fever and with red eyes,yet we still waited till 5th day to confirm it,from there and then after the confirmation,he was treated immediately with IVIG the next day..and Thankfully my son was clear of any complications accompanied by kawasaki..A big thanks for his very attentive pedia and all the people at the hospital who prayed for him..😊😊😊

[@djlilcoop]

How is your son doing today?

[@cathykrueger4899]

When this was first recognized decades ago the treatment was high dose aspirin. My best friend’s daughter had it. She’s now in her 50’s and doing fine.

[@jacquelenbialozynski6671]

❤

[@rajkhatkar8689]

Hi my daughter just 5 years old 2 weeks ago she diagnosed with Kawasaki disease she had fever 40 degree, neck lymph node swelling and later started swelling on feet and hands she got IGIV therapy on 6th day when in hospital they meet the criteria with Kawasaki disease . She is doing well . Thank you god . Well done cooper and other kids being strong and brave in this condition.

[@djlilcoop]

Hope she was caught in time with no heart issues. Check out Kawasakikids.org and share your story. ❤️

[@brickmenow]

My son 6yrs old just got diagnosed with Kawasaki disease today 9/2718 it’s been 4 days that all this started with the swollen lymph glands high fevers rash and puffy blood shot eyes. He started treatment. My heart goes out to you and your family. Thank your for making this video.

[@djlilcoop]

How is your son doing today?

[@StealthyAirsoft]

My son was diagnosed on April 4th last year at age 8. Fortunately for us we were sent from our local hospital to A.I.Dupont and was treated with in the 10 day window.His IVIG was very successfully!! Our local Dr. Brenda with Nanticoke Physcians Network is our hero because she is the one who stood up for my son against other ER Docs and insisted my son be more closely checked or we would have not been so fortunate!! Prayers for your guy!!

[@djlilcoop]

How is your son doing today?

[@helenedwards9304]

My son had these symptoms the Dr treated him as if he had this disease without any testing. He was three😊I’m soooooo thankful. No heart damage. The Dr said look for the giraffe among the horses. Brilliant and Gods grace.

[@djlilcoop]

We are so glad your son was caught in time. Big hugs from us in Colorado.

[@helenedwards9304]

Thank you he is now 29. I pray as time goes on your beautiful child will get better and better

[@sherrybilello7516]

Thank you. You guys are amazing. I had Kawasaki’s when I was 5 back in 1986. They had to fly a doctor in from Chicago to diagnose me, no doctor in Detroit had seen it before. I had no idea about the 10 day window however I’m pretty sure I went past that just because I had just started Kindergarten and I think there was an assumption I was acting different because I was adjusting to the new routine. But thankfully I did not have and heart issues and I am 42 now with a 9 year old little boy. Bless you and your family and I’ll definitely have to look up ur foundation and find more info!

[@djlilcoop]

Thank you and so glad you got caught in time with no heart issues. Thank you for your comment and yes check us out at www.Kawasakikids.org

[@raphaelitinfrastructuresol5237]

sherry, I am from India. My son (5 yrs old) was admitted to the hospital this June 2023. He was diagnosed with Kawasaki. When he had fever I took him to the local area clinic but no result the temperature was more than 103 each time .8th day I took him to the hospital its an Indian government hospital, and the doctor found that he had Kawasaki as they have seen all the symptoms like red eye, strawberry lips with kissing tonsil with some rashes in the chest and high fever. His weight is 17 depending on his weight IVIG of 6 bottles where given to him I have some questions, can you answer them if you know 1. what causes this diseases 2. Do this fever will come again 3. After you discharge from hospital, have you taken any medicine ---as my son advised to take an aspirin tablet 4. Any treatment do we have to go under like cardio.........

[@anneseager2910]

​@@raphaelitinfrastructuresol52377😅h68u😮77

[@williamstone9342]

I went through it when I was 4-5 we went to multiple hospitals, but they couldn’t figure out what was going on but we finally went one and they diagnosed me with Kawasaki disease was really scary at the time I had no idea what was going on and we missed the 10 day deadline

[@justinaortega1508]

We are currently inpatient with our baby who was just diagnosed im confused and lost but trying to get informed thank you!!!

[@djlilcoop]

You can email me at [e-mail] if you need questions answered. Thanks

[@surikatz123]

my grandson had this at 8 months old (i think). initially the doctor missed it the ER didnt even bother with a blood test. went back to the dictor. i think it was day 8. Thank G-d, he was treated at a top hospital. He's 8 years old. Healthy and happy. A little quirky. But thats thanks to his genes.

[@honeybunny3365]

I understand what he went through cause I had it when I was around 5 years old. I wouldn't wish it on anyone.

[@djlilcoop]

How are you doing today?

[@honeybunny3365]

@@djlilcoop I'm doing well, what about you?

[@FeliciaJohns-lr8zt]

Prayers and healings

[@ninaalexis5801]

My daughter had just turned 3 (Sep 2017). We took her emergency, we took her to urgent care. they kept telling us it was a virus. We were just past the 10 days. She did suffer slight dilation of her arteries. It was extremely scary.

[@ninaalexis5801]

Thank you for sharing your story and helping future families.

[@djlilcoop]

Darn it! There is a chance the dilation will regress in the year post KD. Stay strong and let us know if you have any questions.

[@dejawright2143]

My son was recently diagnosed with Kawasaki he had one treatment and sent him home after 48 hours …one week after being discharged he’s still experiencing fevers and his body is in complete pain once the Tylenol and aspirin ware off. I went back to the emergency room and they sent him home because it seemed like he was doing fine. I emphasized how that was only due to the medication. Today his rash is more prominent than before the treatment and his body aches go from his arm to his neck to his thigh …it’s rough ..he has a follow up appt with a infectious disease doctor tomorrow I pray they can reassure me that this is part of the process of getting better because in my opinion I see no difference and we’re on week 3 going on 4 of fevers

[@djlilcoop]

He had a treatment of IVIG? How is he doing today. You can email us at [e-mail] if you have any questions that we can answer. Thank you!

[@dejawright2143]

@@djlilcoop yes a week and a half ago. He was readmitted last night after the appointment. Currently getting another treatment. Thank you I will email

[@djlilcoop]

@@dejawright2143 Okay I hope the 2nd dose of IVIG will make a difference. keep us in the loop. Thanks Shawn

[@DangerDude420]

Hope your still going strong Cooper 💪 I got Kawasakis myself when I was 3 as well, it was the early 90s so even less was known about it and even more rare in America. doctors didn’t really know what was wrong with me they asked who my pediatrician was and my mom wrote Dr kim, well a different dr Kim ended up getting the call and recognized what was wrong with me and had to pretty much yell at the other doctors to treat for it or I could die. Not positive if I was in the ten days or not. I am 33 now for a long time the Kawasakis became something I just assumed was done with. Although I did have some ekg testing related to it done in highschool when I started developing breathing problems from pushing my body to hard In wrestling. I have been having symptoms of low iron and hemoglobins since I was about 23. And now there finally starting to effect me a little more despite me eating healthy and working out more then I ever have. I had a hunch out of nowhere today to look into Kawasakis and see if it effects people later in life, after reading what little info there was I have been scared. I have a 2 year old son myself now, he’s my entire world. Wish I thought of bringing this up to my doctor last week when I saw him, he ordered an ultrasound on my abdomen cause I also had high liver enzymes. I hope to find answers soon.

[@raylenepatrick4698]

This is unbelievable. I live in New Zealand where health care is free. U can have private medical insurance, but if you dont no treatment is with held and no bills are sent. I cant imagine the stress that folks must have when their children are sick and money becomes a primary concern.

[@dianedujour6219]

My one year old was just diagnosed and we are waiting for her appointment with her cardiologist. We missed the ten day window.

[@djlilcoop]

Hope your kiddo is doing well.

[@soniamishra1818]

Dr ne starting me btaya nhi tha kya 10 days let q ho gye

[@sandrastyers6443]

I had a friend that her son had it. He did not get diagnosed (said he had asthma.) He had open heart surgery, numerous other complications. Did not survive.

[@janececelia7448]

All nations should have universal healthcare whether you pay taxes or not, have a job or not. It's a case of the have's looking after the have nots for the benefit of all. This is a terrible situation for this family.

[@joijuaire-darfler4614]

What does health insurance have to do with this story? Obviously this family had insurance in order to have appendectomy, so not lacking care or treatment.

[@kowalchukm]

$30,000 for a singular dose of medication is OUTRAGEOUS. And this was 5 years ago?! I'm sure that medicine costs $150,000 a dose in 2023.

[@djlilcoop]

Yes that medicine is $100k now and he takes it 2x a month. Crazy for sure. Thanks for the comment

[@kowalchukm]

@@djlilcoop that’s ludicrous and completely unacceptable. No person or family should be faced with that kind of financial burden in order to stay healthy. 💔 blessings to you all

[@joijuaire-darfler4614]

Obviously patient's family cannot afford, so most likely on Medicaid.

[@keagaming9837]

Just curious, but what if someone gets diagnosed a few hours after the 10 day window? And what specific symptoms are there that mark the very start of the 10 day window? Is it always a 10 day window?

[@djlilcoop]

It's not an exact science down to the hour. In general the 10 day window is crucial to help save the heart from an aneurysm.

[@Animals55patty]

Expense should not be the main topic of this😊

[@jerikobolotaolo3291]

I was really young when this happend my parents always tell me how they had to do cpr on me when I was a baby

[@djlilcoop]

WOW! Hope you are doing well now.

[@internetmusic123]

Omg

[@elisagonzalez2646]

We gat my son on the 10day

[@djlilcoop]

Hope he is doing well.

[@senceriacruse4943]

God bless you and your family and it's going to be alright in Jesus name !

[@danthedewman1]

gods watching it happen, everyday

[@internetmusic123]

They took his appendix FOR NOOOOO REASON?????

[@djlilcoop]

Yes. He now lives with a giant coronary aneurysm and stage 3 kidney failure. - His dad

[@kshitijmanchanda8893]

@@djlilcoop I hope you and your kiddo gets strength to deal with the disease. I am 3rd year medical student. Your video has been very helpful to me as I was studying kawasaki disease

[@shawnlogan2160]

@@kshitijmanchanda8893 Thank you for your dedication to the medical field. Cooper is doing great

[@junbh2]

You don't use your appendix so AFAIK it does no harm to remove it and prevents ever getting appendicitis in the future. Other than it's an avoidable surgery. The much bigger issue it seems is that all the time they were distracted by that he wasn't being treated for his real problem.

[@valkyrie1066]

I'm sure that was a shock to remove a healthy appendix and wonder....but WHY? Why is this poor child in pain? I'm sure the surgeon felt a pang when he realized that was NOT the problem. NO life-saving medicine should cost that much. You can't make money back for all your research on the LIVES of people. No disrespect to the working scientists, my beef is with the pharmacy company's business marketing culture. It is not just another business, like selling guns or peanut butter. It is not a luxury item, and should NEVER be. "We only care about our personal profit"...Greed is evil, not business savvy.

[@leamichelle3792]

So sad that is all about the money. As usual. I see not a single feeling in this mum. She sits there with her seriously sick son and the only thing she talks and is worried about is money. She obviously learnt by heart the amount of each bill his disease ever caused.

[@Thunderpaws111]

How can you even say that? Simply not true.

[@nowhereinparticularever]

Ha! Thank god for obamas healthcare , taking care of all of your bills, eh? Looks like your doing okay, nice home your living in, and you are all still here. TRY BEING GRATEFUL for what you have.