Hi, my name is Sadie and I am fundraising for my daughter Sophia. Sophia is 6 months old and living with an ileostomy after being diagnosed with a rare disease shortly after birth called Total Colonic Plus Small Bowel Hirschsprung's Disease. 

Just 15 hours after leaving the hospital with our brand new baby girl and reuniting with our son, a new big brother, we rushed Sophia to the ER. What followed was the beginning of a long and painful diagnostic journey. After being transferred 2 hours away from home, countless tests, procedures, life saving emergency surgery and overwhelming uncertainty, we finally received the diagnosis that changed everything:

Sophia has Total Colonic Plus Small Bowel Hirschsprung’s Disease (TCHD+) — one of the rarest and most severe forms of Hirschsprung’s disease occurring to approximately 1 in every 180,000 babies. Only 1 or 2 cases are see in Canada annually. 

This condition occurs during fetal development when the nerve cells that control bowel function never develop. In Sophia’s case, these nerve cells are missing throughout her entire colon and some of her small intestine. Without those nerves, the bowels cannot function normally.

At just 3 weeks old, Sophia had to undergo major surgery 2 hours away from home to save her life. Her surgical team in London created a double loop ileostomy, allowing her body to function through a stoma and ostomy bag.

This surgery saved her life but it was only the first step in a long journey.

The next surgery will shape Sophia’s future. Sophia now needs a complex ileostomy reversal and pull-through surgery. This operation will reconnect her digestive system and determine how her bowel functions for the rest of her life.

For children with extensive Hirschsprung’s disease like Sophia, this surgery is incredibly delicate and specialized.

The surgeon performing this procedure will quite literally shape Sophia’s future quality of life which is why I am wanting to take her to a colorectal specialist surgeon at Nationwide Children’s Hospital Center for Colorectal and Pelvic Reconstruction in Ohio. Unfortunately, there are no colorectal specialists in Ontario and anything out of the province or country will have to be paid out of pocket.

Sometimes, children can face lifelong complications such as:

Severe bowel dysfunction, Chronic infections like enterocolitis, Multiple additional surgeries, Incontinence or lifelong medical interventions.

Because Sophia’s condition involves her entire colon, it is critical that her surgery is performed by a highly experienced pediatric colorectal specialist who regularly treats complex Hirschsprung’s cases.

After everything Sophia has already endured, we want to give her the best possible chance at a healthy life.

In just a few short months of life, Sophia has already experienced more medical trauma than most people will in a lifetime.

She has faced: emergency hospital visits, countless medical tests and imaging, surgery and anesthesia, tubes, monitors, and procedures, not eating for almost a month on just Total Parental Nutrition through her PICC line and learning to live with an ostomy bag as a baby. Watching your child go through this is something no parent can truly prepare for.

But through it all, Sophia continues to show incredible strength. Our family now calls her “Sophia Strong.”

We need your help because accessing the specialized paediatric colorectal care Sophia needs comes with significant financial challenges.

Between travel, medical expenses, and costs not covered through standard healthcare pathways, the financial burden of ensuring Sophia receives the right surgeon and specialized care is overwhelming.

We are raising funds so Sophia can receive surgery from a pediatric colorectal specialist surgeon experienced in treating complex Hirschsprung’s disease.

This surgery has the potential to give Sophia the chance to live without an ostomy bag, improved bowel function, greater independence as she grows, and a better quality of life for years to come. There is no cure for this disease only management and with the right speciality care Sophia as the potential to have long term success with this next surgery. 

Sophia has already fought so hard just to be here. With the right specialist and the right care, we can give her the chance to grow up stronger than the disease she was born with.

As her parents, our only goal is to give her the best chance at a healthy future.

Every donation, share, and message of support brings us closer to making this life-changing surgery possible for our daughter.

If we don’t raise enough funds to help us afford specialized colorectal care in Ohio then we will use the funds to help support our family while we travel back home for Caden to London or Toronto and so both Cody and I can be with her during and after surgery without Cody worrying about work during that time as I will be her medical caregiver for the next few years. 

If you’re unable to donate, sharing Sophia’s story means just as much to us. 

From the bottom of our hearts, thank you for supporting Sophia’s fight.