Help Theo get life saving treatment at Mayo Clinic

My name is Cassandra Graham and a mom of 3 boys and my youngest son Theo is in a fight for his life desperately trying to hold onto his childhood battling a rare kidney disease that our Canadian medical system is no longer equipment to care for. My biggest fear is people looking at Theo on the outside and thinking he’s like every other 7-year boy. Theo is not like the other 7-year old's he is courageously fighting a silent battle invisible to those around him … a scary war is raging inside his little body that is destroying his most vital organs from the inside out. Theo is in trouble; time is of the essence, and we must help him.

Theo was diagnosed with DENTs disease in the spring of 2021 despite our best efforts to prolong his kidney health its not enough and his future as a happy energetic boy is closing. The medications Theo has been taking are outdated and causing further kidney damage making him sicker. There has been a steady decline in his kidney function partially due to these meds Canada uses. Medication that is no longer prescribe in the United States or other countries due to the irreversible damage it’s shown to have on paediatric organs, Theo’s included.

Theo was born with a heart condition that made him very sick as a baby filling our days with fear and our nights long. Together night after night I would rock with him singing ‘rock a bye baby’ and whisper “You’re strong, your heart is strong, you’re my special Theo, I love you”.. Now, Theo has days of confusion where he doesn’t even recognize who we are. Tiredness causing him to miss his sports and playing with his brothers. Throwing up bile for days causing a state of dehydration no parent wants to experience seeing in their child. At times his breath so shallow without my cheek over his lips I’d swear he wasn’t breathing. On the tough days when Theo is so sick he just curls up on the bathroom floor, his skin sunken in from dehydration, around his eyes blackened, weak and mouth so dry he can barely speak he’ll whisper, “it’s ok, it’s ok”, “you’re my best mom” and we’ll hold each other humming our song ‘Rock a bye baby’…. And I cry silently feeling helpless to fix him.

Theo’s DENTs disease is so rare most medical professionals have never heard of it including even nephologists (Kidney specialists). Theo is the first confirmed case that we know of in Canada in 3 decades so the data here is very limited and the experience of professionals even more limited. Based on Theo’s last blood and urine tests provide evidence all efforts to keep him hydrated are failing. This dehydration is causing further damage to his kidneys. Theo’s case is further complicated by a heart condition.

The United States philosophy and management based on proven data are years ahead of Canada. The Mayo Clinic in Minnesota offers specialized treatment for Dents Disease under the expertise of their nephrology department, renowned for its work on rare kidney diseases. They Mayo clinic cardiac department will also provide a comprehensive consultation to determine the best course of action for Theo’s heart condition as we navigate his disease. The Mayo Clinic only takes on patients they feel they can help or improve care of. Theo has a chance but, his time for optimal results is closing.

We don’t know the full extent of Theo’s disease and he has many symptoms that are being overlooked in Canada but, have the Mayo Clinic very concerned. We MUST get him and his brother (diagnosed earlier this year with the DENTs and approved for care) to the Mayo Clinic.

Theo is a vibrant, happy little boy that lives life to the fullest. He loves sports, wrestling, playing with friends, and hide and go seek in the dark with his brothers. He is compassionate, kind and sees everyone as a friend. His life is dependant on us getting him to this team of doctors in the states.

Facing the prospect of specialized care at the Mayo clinic comes with significant financial challenges. As Canadians, we must fund all associated costs, including travel, food, accommodations, and medical testing, estimated at over $25,000 for the initial two-week visit. This trip is also marked by loss of income during our time away.

We ask for your support to help cover these substantial costs, allowing us to focus on Theo and Liam’s health hand wellbeing. Your contribution will support our family’s journey towards hope and better health for our sons.