Willa's Story

We have been a constant fixture at the Alberta Children’s Hospital since Willa was born five years ago.  Willa has endured many uphill battles such as bowel infections, kidney scans, and heart procedures- but her main fight has been because of Anemia.  Willa was born anemic and had her first blood transfusion at just four hours old.  As new parents, seeing your newborn baby transfused is pretty scary.  We thought the worst was over but a month later we were admitted to the Children’s hospital because Willa was anemic again.  Our long journey was just beginning and Willa’s health would be in jeopardy many, many times over the course of the next few years. 

In the early days Willa was tested for leukemia and other cancers - along with numerous other possibilities for why she was not making her own red blood cells.  Red blood cells are what carry hemoglobin around to the body.  Children like Willa who struggle to make red cells have low oxygen and look tired and pale all the time.  They need constant blood transfusions to top them up and help give them energy…and to live. 

 Her diagnosis evaded doctors for nearly three years.  We even made the trip to Sick Kids in Toronto thinking that if anyone could give us an answer – it would be them.  But several weeks and many tests later, we returned to Calgary no wiser and completely discouraged.

 I just remember thinking there had to be someone to help us solve this mystery.  After all, Willa was just a tiny little girl - how hard could it be? And just when my husband Brad and I were at the lowest of our despair, we met our brilliant Hematologist, Dr. Doan Le. 

Within a week of meeting Dr. Le, she ordered a bone marrow biopsy and had our answer.  It was Sideroblastic Anemia – an extremely rare form of Anemia.  In fact there are only 2 – 3 kids in Canada with it and they are all boys, except Willa.  So, it was no wonder it had been so difficult to reach a diagnosis.

I remember crying in the room partly from relief because we at last had an answer but mostly because there were not many options for treatment.  Dr. Le stood in the room holding me tight and told me that we would fight this together and that she would do everything she could to help Willa. 

We tried all of the standard treatments, which failed.  So that left only two options.  The first was to have continuous blood transfusions for the rest of Willa’s life.  In time though, iron would build up in her organs and they would eventually shut down.  To combat the iron overload we would have to start chelation therapy.  This meant that Willa would have to be hooked up to a machine for 10-12 hours a day for the rest of her life.  Plus the drug for chelating can cause kidney damage and Willa was born with only one kidney and we want to protect her single kidney.  We were told that the transfusions and chelation would allow Willa to have a pretty good life…but we wanted her to have a GREAT life.

Our second option was Bone Marrow Transplant.  So, after many long and teary conversations about our options we met Dr. Victor Lewis - Head of the Bone Marrow Transplant Program at the Alberta Children’s Hospital. Dr. Lewis explained the bone marrow transplant procedure and said with Sideroblastic Anemia he could give us a 50/50 chance of survival.  He told us that with a transplant we could walk Willa in to the hospital but there was no guarantee we could walk her out.

He also said that because of the rarity of the disorder ideally we needed a matched donor who was a relative.  Neither Brad nor I were a match for Willa and we had no other children- that is until June 10, 2006.  That is the date her baby brother James was born and his cord blood was tested to see if it was a match.  To have a sibling match is a less than a 33% chance.  In fact many people have six children and none of them are matches, and we knew the odds were not good, so we were not holding our breath.

A few weeks later Dr. Le called us and wanted to meet with us.  We walked in to the room nervously only to be told that Willa and James were in fact a perfect match.  Tears of joy poured from our eyes and we hugged the nurses and Dr. Le.  We had been given a true gift and a huge sign to tell us to go forward with the transplant as a chance to give Willa an opportunity to live a very full life. 

On August 7, 2007 we drove our little girl up Shaganappi Trail to the hospital.  It was a terrifying and extremely emotional trip for Brad and I.  We both cried the entire way to the hospital.  The reality that we could lose Willa was very real and all we wanted to do was curl up and make this bad dream go away.  And then we walked her into the most beautiful place on earth – Unit One – the Oncology Unit at the Alberta Children's Hospital.  This is where our child’s life was saved.

Our lives were rocked by having a sick child but our lives have been enormously enriched by it too.  We have gotten to know and love some of the world’s best and kindest people and I mean it when I say we are so grateful for this journey.  Willa is doing amazingly well.  And even she is grateful.  Her nickname for her little brother James is “Supes” which is short for Superhero.

If I could stand in the middle of the cafeteria at the hospital every day for the rest of my life and shout “Thank you! Thank you!  Thank you!” - it still would not be enough.  We now have the chance to love, hug and watch our daughter grow.  There is no greater gift in this world.

Katie & Brad, grateful parents