Will's Power Foundation

Donations will go directly to the Vascular Anomalies Clinic at the Hospital for Sick Children in Toronto with the intention of expanding treatment and research of Complex Lymphatic Anomalies.

This will help children across Canada! Thank-you for your support. Together we are creating change!

All About Me!

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!

A BIT About OUR JOURNEY

We are Jen and Kevin. We live close to the city of St. Catharines in Ontario, Canada with our 4 children. Will is our second born son. He had a very healthy childhood. He was rarely sick and when he was he bounced back quickly. At the age of seven, he contracted pneumonia and ended up on a ventilator in the pediatric intensive care unit at our local hospital. He never fully recovered.

Later, we learned he likely had an underlying problem with his lymphatic system , once referred to lymphangiomatosis, now called a Generalized Lymphatic Anomaly (GLA). When William became sick, we felt terribly isolated and realized the limited resources and information available to parents regarding this condition. This disease goes through periods of stability and can also flare at any time. Possible triggers include, illness, fatigue, allergies etc.

The links below offer a general description of the disease, great for children as well as adults. More detailed links can be found at the bottom of the page.

What is the lymphatic system? Pt. 1 (anatomy and physiology) https://www.youtube.com/watch?v=MfALHzheD-g&t=4s

What is the lymphatic system Pt. 2 (lymphatic malformations) https://www.youtube.com/watch?v=QU6XMOo5UOE

Our Goals

It has been our experience to date that there are no specialized lymphatic anomaly centers in Canada. Apparently, there is also limited research, specifically genetic research, for complex lymphatic anomalies currently being undertaken in Canada - at least that we have been made aware of (and we have asked!)

Our goals are to advance research, patient care, and advocacy relating to Complex Lymphatic Anomalies within Canada, with a primary focus, but not limited to pediatrics.

We would also like to help support other families going through a journey similar to ourselves. We are determined to help further research for lymphatics in pediatrics , with a focus on genetics. Our end goal is to find a cure!

We are trying to raise money to fund:

1. Centre:

Create a dedicated Vascular Anomaly Centre at The Hospital for Sick Children in Toronto, Canada, with a focus on pediatric Complex Lymphatic Anomalies. This centre will facilitate a multi-disciplinary approach to pediatric care and treatment of lymphatic anomalies. The Centre will also help support, facilitate, direct and transition these patients to appropriate adult care and treatment centres.

2. Research:

Support research in Canada to further the understanding of lymphatic and vascular anomalies and their genetic pathways.

3. Medical:

Connect and create understanding by medical professionals to foster a collaborative and multi-disciplinary approach to the diagnosis and treatment of these diseases.

4. Family:

Support families going through treatment for lymphatic anomalies, whether it be for accommodation, meals, parking or whatever their family requires to get the care they need (ex. childcare, transportation, out-of-country expenses).

A DAY IN THE LIFE. . . .

Just a kid. . . .

In Will's spare time he tries his best to just be a kid. He remarked once that the best advice he received from one of his many doctors was to "just be a kid". He said it was the best thing he's ever heard! This disease feels very limiting and constrictive, especially with few answers available. Days can be scary, especially for a child.

He went from making the rep soccer team and playing hockey to barely being able to walk. This triggered an earnest search for new options for Will both socially and medically. He is finding new interests that complement his ever-changing abilities. Our hope is one day he can return to the full range of activities he once participated in and loved, while incorporating the newly acquired interests he now enjoys!

*Some images in this video may not be suitable for children*

Appointments

Take a glimpse into a typical day full of check-ups. During periods of stability Will is at the hospital once a month. If there is a change to his health, then follow-ups become more frequent. Will handles these long days very well, despite their not being his definition of an 'ideal' day.

*Suitable for all ages. Video contains medical procedures*

Procedures

Periodically more detailed imaging is required and in this case a biopsy was also needed. Tissue samples were shipped Internationally in hopes of being able to make a diagnosis. Diagnosis would mean targeted medical therapies, rather than trial and error. It is an imperative part of treatment for this disease. Hopefully samples can be tested in Canada with a return of results in the near future.

*Suitable for all ages. Video contains hospital scenes*

laying the foundation

We have teamed up with The Hospital for Sick Children (SickKids) in Toronto, Ontario, Canada. Donations will go directly to the Vascular Anomalies Clinic with the intention of expanding treatment and research of Complex Lymphatic Anomalies. This will help children across Canada! Building upon this we will expand to meet our goals as outlined above. Thank you so very much! You are helping to make a change!

Tax receipts are automatically issued to individuals by SickKids.

Companies receive a gift confirmation receipt from SickKids. They also have the option to display their company logo and website link on both the Will's Power website as well as the SickKids donor page.

Click here to donate!

More Information on lymphatic malformations

VIDEOS:

This video is an excellent introduction to the differences in Complex Lymphatic Anomalies. It is recommended you begin here before diving into the literature:

Complex Lymphatic Anomalies 101: An Overview for the Layperson

CLA 101: An Overview : Patients & Caregivers : Lymphangiomatosis & Gorham's Disease Alliance (lgdalliance.org)

The following 2 videos are wonderful explanations of the lymphatic system for children (and adults):

What is the lymphatic system? Pt. 1 (anatomy and physiology) https://www.youtube.com/watch?v=MfALHzheD-g&t=4s

What is the lymphatic system Pt. 2 (lymphatic malformations) https://www.youtube.com/watch?v=QU6XMOo5UOE

DEFINITIONS:

Note: when searching for these diseases on Canadian databases they do not exist. Highlighting the need for awareness as well as research to be strengthened in Canada. All of the sites listed below are International.

Complex Lymphatic Anomalies:

https://www.texaschildrens.org/health/complex-lymphatic-anomalies

Lymphatic Malformations:

https://rarediseases.org/rare-diseases/lymphatic-malformations/

Generalized Lymphatic Anomaly:

https://www.childrenshospital.org/conditions/generalized-lymphatic-anomaly#:~:text=Generalized%20lymphatic%20anomaly%20(GLA)%20%E2%80%94,)%2C%20bones%20and%20soft%20tissue.

Kaposiform Lymphangiomatosis (KLA):

https://rarediseases.org/gard-rare-disease/kaposiform-lymphangiomatosis/

Gorham Stout Disease (GSD):

https://rarediseases.org/rare-diseases/gorham-stout-disease/

Kaposiform Hemangioendothelioma (KHE):

https://www.childrenshospital.org/conditions/kaposiform-hemangioendothelioma