Isaiah's Kawasaki Disease Journey

[new blog post] It has been a long time since I have written a post on my blog, but I felt it necessary to share the truth about Kawasaki disease parents, our anxiety and the reasons why this pandemic has all of us on edge. As hard as people try to sympathize, it is often difficult for them to understand why coping during these trying times have been so challenging for Kawasaki disease parents. Hoping my post allows others to understand us a little better. http://isaiahskdjourney.blogspot.com//kawasaki-disease-par

[Note: All opinions are my own, based on information from credible sources.] Many family and friends who have reached out to me over the past couple weeks regarding the recent news reports of a multi-system inflammatory illness, possibly linked with COVID-19, which has been described as similar to/linked to Kawasaki disease or Kawasaki syndrome. I just wanted to provide some clarification around these media reports. It has not been confirmed if there is any link between Kawas...aki disease and this inflammatory illness that is being seen in children. However, some of the symptoms are the same as those seen in Kawasaki disease (KD), hence the mention of "Kawasaki disease-like" symptoms. There are many possibilities, including, but not limited to: -KD triggered by COVID-19 -COVID-19 manifesting with these symptoms -a new syndrome emerging (possibly related to COVID-19) -COVID-19 and KD occurring simultaneously Doctors will not be able to make any conclusive statements until much more data is gathered and analyzed. Sadly, right now there are more questions than answers. I think the important takeaway is that if your child experiences any of the symptoms of this inflammatory illness and is generally unwell, please consult with a doctor as soon as possible. With regards to Kawasaki disease, I think it is important to be aware of the symptoms now and in the future, regardless of this pandemic. (I have attached an image from Kawasaki Disease Canada with more information.) Early detection is critical and can help save a child from permanent heart damage. If your child has a fever for 5 days with at least 2 other symptoms, please consult with a doctor. With regards to specific questions concerning Isaiah: 1) Is he more likely to develop COVID-19 or this inflammatory syndrome, because he had KD in the past? The available evidence does not indicate that he is more likely to be affected by either, but there are no certainties. 2) Is he more at risk because he has heart damage and coronary aneurysms? Experts are currently unsure whether or not KD patients with heart damage may be at increased risk of heart problems should they develop COVID-19. However, based on case studies in the adult population that I have reviewed, COVID-19 can be a risk to those with pre-existing heart conditions. The bottom line is that there are still many unknowns, so we are doing everything reasonably possible within our means to keep Isaiah and the rest of our family safe. While these severe paediatric cases remain rare, I have dealt with enough rare in my lifetime and choose to proceed with an abundance of caution. Stay safe everyone! Feel free to ask me questions about the current situation, or you can also view the FAQ's on the Kawasaki Disease Canada website: https://kdcanada.org/kawasaki-disease-and-covid-19-faqs/

Most people know that I raise awareness of Kawasaki disease, because my son has acquired heart disease as a result of having had KD. However, I also raise awareness because of this cutie picture below. This is Dylan and I never had the privilege of meeting him. Sadly, he passed away at the age of six, due to an undiagnosed case of Kawasaki disease. However, I have had the privilege of knowing and working with his amazing mom, Elizabeth. She is our co-founder and Board Chair at Kawasaki Disease Canada. We do what we do for Isaiah, Dylan and all Kawasaki disease kids everywhere. The ones that are still with us, the ones living altered lives and the ones that are no longer with us, but never forgotten.

Proud to have collaborated with some amazing people from other global Kawasaki disease organizations on this shared international statement addressing some of the concerns regarding Kawasaki disease and COVID-19.

Looking like ninjas for Isaiah’s heart check-up appointment today.

Sharing a list of FAQs about Kawasaki disease and COVID-19. Dr. McCrindle and Dr. Dahdah have done a great job of interpreting the information that has been circulating. Hope it provides some parents with more clarity during these anxious and confusing times.

Sharing an additional update from Kawasaki Disease Canada and Dr. Brian McCrindle. Hopefully, this helps to clarify some of the issues raised by the various articles that have been circulating about Kawasaki disease and COVID-19.

I know the online Kawasaki disease community has been buzzing about the alert that was sent out by the NHS (National Health Service) UK regarding cases of children presenting with symptoms similar to Kawasaki disease, half of which tested negative for COVID-19. The COVD-19 situation is rapidly evolving, so I am sure if any links exist they will be revealed in time. In any case, knowing the symptoms of Kawasaki disease is as important as it ever was.

I have been thinking a lot about gratitude lately. We are living through scary and unprecedented times and while our lives have been turned upside down, we must still find ways to be grateful for the positive things that surround us. As you know, Isaiah has acquired heart disease and reduced heart function, as a result of Kawasaki disease. He requires medication and regular hospital visits. I know firsthand how hard the women and men in the medical profession work every si...ngle day and can only imagine what they are dealing with given the present circumstances. I consider myself lucky, as my husband is able to work from home, so our family of four can stay together safely in our home. But I know that not everyone is able to do so. I wanted to take a moment to express my gratitude to those who have continued to work to help keep Canadians safe and healthy. Much of my gratitude stems from having the ability to stay home and reduce Isaiah's possible exposure to COVID-19, which would not be possible without the work of so many others. THANK YOU for the bottom of my heart!

Today is Kawasaki Disease Awareness Day! I know most of you already know Isaiah's story, but I am posting a few details to make it more relevant for those who may see this post when it is shared. Speaking of sharing....please share to help raise awareness of Kawasaki disease. Early detection could help save a child's heart! --------------------------- My son was born with a healthy heart, but a few weeks before his third birthday he came down with a fever that was original...ly diagnosed as just a virus. Little did I know, that fever signalled the beginning of something that would change his life forever. That fever turned out to be caused by Kawasaki disease, which resulted in the development of coronary aneurysms. My son’s once healthy heart is now considered diseased. He takes multiple heart medications, including blood thinners (which pose their own risks), and underwent open heart double bypass surgery at the age of four. If you have children in your life, please take the time to learn the symptoms of Kawasaki disease. Not a day goes by that I don’t wonder if I could have changed the trajectory of Isaiah’s life if I had only known the symptoms of Kawasaki disease and had brought it to our doctor’s attention earlier. Visit Kawasaki Disease Canada kdcanada.org to learn more. To learn about Isaiah's Kawasaki Disease Journey, visit: http://isaiahskdjourney.blogspot.com/

Sending love and prayers to my friend, Bren-Ann and her brave son, Benjamin. Benjamin was diagnosed with KD at the age of four and you may recall that he has already undergone heart surgery to repair his aortic valve. Benjamin has had a couple minor heart attacks and has recently been experiencing unstable angina. He has been admitted to the hospital and will be undergoing a cath early next week to determine if a bypass will be possible. Benjamin has experienced so many ch...allenges and I have always admired how Bren-Ann has faced them with such positivity and courage. Throughout it all, Benjamin has been brave and full of life. Please send some love and light to Benjamin and his family. You've got this, Benjamin! Your KD family is cheering for you!

Thinking of my friend, Elizabeth, today. Today, her son Dylan would have turned 18 years old. Sadly, he died at the age of six due to a heart attack, resulting from an undiagnosed case of Kawasaki disease. Elizabeth is the Board Chair of Kawasaki Disease Canada and inspires me every day through her courage and determination.... As Elizabeth reflects on the life that Dylan might have had, let us remember why we need to continue raising awareness of Kawasaki disease.

I am happy (and terrified) to announce that I will be running my very first (and probably only) half marathon on October 20th, as I participate in the Toronto Waterfront Marathon. While I consider myself a physically active person, I am by no means a runner. I am strictly a fair weather runner (can't be too hot, too cold or at all rainy) and I would much rather be playing sports or lifting weights. While the 21K I will be running may seem trivial to the many runners/marathone...rs/IronMan conquerors that I know, for me, it is quite the challenge. I always promised myself that the year that Kawasaki Disease Canada became an official charity of the Scotiabank marathon, would be the year that I ran the half marathon, so I am making good on my promise. But my real motivation is the face on the left of the photo. That is the face of 4-year-old Isaiah, taken 24 hours after his double bypass surgery. He has endured so much during his young life, but always with such bravery. He is my inspiration for running. (The photo on the right is a sweaty me after running just over half the race distance and deciding that my 44-year-old knees should be able to hold up for the rest of my training and race day.) If you would like to sponsor me for the race, please visit my personal donation page: https://bit.ly/2U6H3NO All funds raised will go to Kawasaki Disease Canada. I am a Board member and am proud of the work we do to raise awareness, further research and support families. To learn more about Kawasaki disease: https://kdcanada.org/ Better yet, if you would like to join our team, use the charity PIN codes below to receive a discounted registration fee: Marathon or Half Marathon ($80): M19KAWASAKI 5k ($40): 5K19KAWASAKI 5k with Stroller ($45): 5ST19KAWASAKI Thank you so much for your support! #Kawasakidisease #STWM

Sharing the Kawasaki Disease Canada video I was a part of a few years ago. We continue to raise awareness of Kawasaki disease every day in hopes of saving another child from life-changing heart damage. (Shout out to Jonathan Baltrusaitis for his amazing work on all the Kawasaki Disease Canada videos.)

Yesterday marked six years since Isaiah put on his brave face and underwent his double bypass surgery. When I read the update I posted that day, all the feelings of despair come flooding back. After 10 long hours in the OR, the surgeon told us that the operation was not as successful as they had hoped. One of the grafts appeared to be closed off already and the other one was working, but the flow was not very promising. Fast forward six years, to today, and I am so thankf...ul to say that Isaiah's health has been stable since then. The one successful graft has continued to do its job and Isaiah has been able to do all that he aspires to do. It is amazing how a situation that feels so desperate and bleak in the moment, can evolve into years filled with inspiration and light. As a wise doctor once told me, in the face of uncertainty there is always hope. Hold onto hope. Hope can do amazing things. [To read about Isaiah's bypass: https://isaiahskdjourney.blogspot.com/2013//the-bypass.html] #kawasakidisease

Today is Kawasaki Disease Awareness Day! Sharing what I posted to my personal page today... ----------- If I told you that I knew how you could prevent your child from having lifelong heart damage, suffering a heart attack and undergoing bypass surgery at the age of four, would you listen? I hope so.... My son, Isaiah has been through all of those things (and so much more), but perhaps if I had known about Kawasaki disease before he was diagnosed with it, we could have prevented the damage that was done to his heart. Kawasaki disease (KD) is the leading cause of acquired heart disease in children. There is a treatment, but early detection is critical. Early treatment drastically reduces the chance of permanent heart damage. Please learn the symptoms of KD, as shown in the second image or visit the Kawasaki Disease Canada website at kdcanada.org for more information. Isaiah is truly a KD Warrior and doesn't let his heart disease stop him from living his life to the fullest, but I would have done anything to have been able to prevent him from having to face the challenges that he has faced and has yet to face. To learn more about Isaiah's Kawasaki Disease Journey visit http://isaiahskdjourney.blogspot.com

Today, my "Letter to Parents of Kawasaki Disease Heart Warriors" was reposted on the Kawasaki Disease Canada website in an effort to spread more awareness of the lifelong effect KD can have on children and their families. #ThisisKawasakiDiseaseinCanada

Kawasaki Disease Awareness Day is on January 26th. One great way to spread awareness is by sharing your own Kawasaki disease story. My friend, Elizabeth, bravely shared her son, Dylan's tragic story on the Kawasaki Disease Canada website: https://kdcanada.org/dylans-story/ Dylan would have turned 17 years old this past weekend. Please honour him by telling someone about Kawasaki disease. For symptoms, visit: kdcanada.org

Last week I was honoured to be a guest on the 2 Massage Therapists and a Microphone Podcast. I was able to share Isaiah's story and raise awareness of Kawasaki disease. Many thanks to Amanda and Mark for giving me the opportunity to educate their audience about a disease that all parents should be aware of.

I am a proud member of the Board at Kawasaki Disease Canada. If you would like to see what we have been up to or learn more about our organization, please check out our latest newsletter below. You can easily subscribe to the newsletter on our website (http://kdcanada.org/news/news/) or by messaging me with your name and email address.

On this date, seven years ago, Isaiah received a diagnosis that would change the trajectory of his life. Isaiah was diagnosed with Kawasaki disease, which resulted in the development of coronary aneurysms, later causing a heart attack and eventually requiring him to undergo a double bypass operation. He has some permanent heart muscle damage and still has coronary aneurysms, requiring him to continue his daily regime of blood thinners and other meds. Despite all this, or perh...aps because of all of this, Isaiah embraces life each day, meets all challenges head-on and is a fierce competitor. This photo was taken near the finish line during his cross country meet a couple weeks ago. That smile on his face is one of determination. Determination to pass his fellow competitor, determination to be his best self and determination to give it all he has. This is Isaiah's mantra day in and day out. It will serve him well in life, and throughout his Kawasaki disease journey, which I know is not complete. And, in case you were wondering, he did pass the other runner for a strong finish. Take that, Kawasaki disease. There's no stopping Isaiah.

Do you live in the southern Ontario area? If so, come celebrate the Autumn Equinox on Saturday, September 22, 2018 at Kawasaki Disease Canada's fundraiser Changing Leaves, Changing Lives! This licensed (19+ years) dinner event will be held under a marquee tent at scenic Victoria Park in Kitchener, Ontario. This event will feature dinner & dessert from gourmet food trucks, beer, wine and non-alcoholic beverages. Enjoy live entertainment by the Luke Hunter Jazz Trio and dan...cing to a celebrated DJ! All proceeds go to support our national charitable organization, Kawasaki Disease Canada. Tickets are $100 and can be purchased online: https://kitchenerwaterloo.snapd.com/events/view/1160950