As parents, we will go to the ends of the earth for our children. For our son Noah, who was born with a complex facial Venous Malformation, this is not a metaphor. Venous Malformations are an exceptionally rare type of birthmark made up of enlarged, tangled veins that grow with the child, causing chronic pain, functional issues, and significant facial swelling.

 

Noah is in need of a life-changing procedure in Switzerland (Electrosclerotherapy), where he will have access to cutting-edge medical care.

 

At just two and a half years old, Noah has already been under anesthesia seven times for surgeries, medical imaging, and invasive procedures.

 

The Children’s Hospital of Zurich has provided a formal estimate of 25,000 Swiss francs ($43,000 CAD) for the procedure Noah requires. This does not include flights, accommodation for two weeks until Noah is cleared to fly, or any costs that may arise due to medical complications.

 

As Noah is getting older, he’s beginning to face the social weight of his condition. We worry about his future ability to move through the world with confidence and to participate in sports and other physical activities. As his parents, that is devastating.

 

Noah’s Rare Diagnosis:

Venous Malformations (VM) are exceptionally rare, appearing in only about 0.01% of births globally. He is truly one in ten thousand.

 

Through genetic testing we learned that Noah carries a specific TEK gene mutation that causes veins to develop incorrectly and predisposes him to blood clotting disorders, adding a layer of risk to every step of his care.

 

Why Switzerland?

Treatment options for these types of lesions are extremely limited. The first stage in Noah’s treatment involves shrinking the mass - which is a vital step before surgery can even be considered. Standard sclerotherapy is offered here in Canada; however, Noah underwent this in 2024 with no results. Additionally, the waitlist for standard sclerotherapy at BC Children’s Hospital is currently up to two years long between each session.

 

Fortunately, there is an alternative offered in Switzerland. Electrosclerotherapy is an advanced practice performed in Europe that experts note is 100x more powerful than standard sclerotherapy. Both procedures use a medication called Bleomycin, which has a lifetime maximum dose before it risks damaging lung tissue. This is a huge consideration for Noah’s future, due to the complexity of his mass and the ongoing need for treatment.

 

Last April, while living in Switzerland, we were fortunate enough to undergo one session of Electrosclerotherapy at the Children’s Hospital in Zurich. Within two weeks the change to Noah’s upper lip was obvious; for the first time, we could see his tiny top teeth when he smiled. The results were beyond what we could have hoped for, and we are desperate to get Noah back to Switzerland for another session.

 

Noah is a gentle and sweet-natured little boy who is innately drawn to sports. At home he is also funny, silly, and energetic, but in public he has grown to be quiet and shy. From the moment Noah could sit up in his stroller seat at the playground, the questions from children (and adults) started. Genuine curiosity is often overshadowed by unwanted attention, name-calling, and the early stages of bullying.

 

Noah’s journey does not end in Switzerland, that is just the beginning – a very important milestone. Our long-term goal is to establish a specialized care team at SickKids in Toronto, which will involve ongoing travel costs throughout Noah’s childhood and adolescence.

 

We truly appreciate any contributions to reduce this financial burden. It would mean the world to our family. We want to see our smart and wonderful little boy live a happy and healthy life. For those who do not have the means to donate - we would be extremely grateful for you to share our page.

 

 

From the bottom of our hearts - Thank you,

 

Garry, Whitney, Isabella, and Noah