Will's Power

Hi I'm Will, I have a Complex Lymphatic Anomaly.  It is a very rare condition and there are not many others like me.  When I get sick my lungs fill with lymphatic fluid and I cannot breathe well.  I need to have chest tubes and oxygen to help me.  The chest tube hurts me a lot and I have to take special medicine to help with the pain. It is very hard to walk and move and I stay in bed a lot which I do not like. 

The last time this happened to me I was in the hospital for 50 days and 50 nights.  No one was able to visit me because of COVID, only my Mom or Dad could stay with me.  I really missed my brothers, sister, and friends.  I just wanted to go home and play with them and have fun.  Once I missed my brother's birthday and Father's day.  I just want to get better so I don't have to miss anything else.  

I have done so many things to try and help me to get better.  In the past 2 years, I have seen over 70 doctors, physiotherapists, respiratory therapists and registered dietitians at different hospitals and institutions.  They were all so nice to me and tried to help.  I have had x-rays, CT scans, MRIs, sclerotherapy, ultrasounds, echocardiograms, MR lymphangiograms, electrocardiograms, chest tubes, bone density scans, biopsies, lots of blood work, chemotherapy, TPN (Total Parenteral Nutrition), medium chain triglyceride (MCT) and high protein diet.  I even had to go on a low fat diet!  That was so hard, I missed my favourite foods.  Me and my Mom tried new recipes, but I was SO happy when my doctor told me I could eat normal food again!  We made a blog if you are on a low fat diet too, you can see my favourite recipes here:  https://equipoise38.wixsite.com/hero

We do not know what type of anomaly I have so I don't know what medicine to take to help me.  The way to find out is through genetic testing.  Canada does not have a lymphatic center. We also do not know of any research happening in Canada now that can help me and kids like me.  I may be travelling to the United States to get the help I need.  I would like to stay in Canada with my family.  I hope we can create a place in Canada to help all the kids like me.  Somewhere that research and genetic testing can happen and to one day find a cure!  I really hope that you can help me and others like me to make this happen.  Thank-you for supporting us!