Medical care for Maci Blackburn

Hi my name is Ann Wing and I am a close friend of the Blackburn family. The Blackburns are an amazing family that go above and beyond for everyone in their life. They are that family that you can rely on to help in anyway. Unfortunately their daughter Maci has fallen ill these last 3 years. I have known Maci since she was a baby. Maxi used to be so full of life. A bright star on a dark night. She loved playing hockey with the boys, spending all of her time with animals, camping, etc. She loved creating artwork that made people smile. Her and her friends would spend the summer days biking and swimming.

In just a few short years, that joy that once was in Maci’s life feels unattainable. Her light has faded to basic survival at this point. Yes, she still does some of the things she loves, but at great cost to her energy level and pain control.

Maci has been diagnosed with MALS (Medial Accruate Ligament Syndrome)which is a very rare disorder that causes abdominal pain comparable to end stage pancreatic cancer. This is a rarely diagnosed disorder in adults and even more rarely diagnosed in children.

The journey to Maci’s diagnosis has not been easy, humbling at best… she is the true definition of SISU. On a daily basis she deals with the pain of this disease as well as constant nausea, headaches, dizziness and weakness in her muscles. MALS has the ability to affect the body as a whole, not just one area. Eating is a daily struggle as is drinking any fluids as both put excess pressure on the nerves that are the root of the issue.

Maci struggles to eat, her pain is not even in a space where it's able to be controlled. It's constant but much worse when she eats. Along with her diagnosis of Medial Arcruate Ligament Syndrome, she's also been diagnosed with a growth hormone deficiency where she has to have daily injections (similar to an insulin injection) of growth hormones to stimulate her body to grow. I could go on an on about the things she deals with, but the hardest thing to watch is how sad she is... she feels like she doesn't matter to any of the specialists that she has seen.

Maci is now facing an intricate surgical procedure that will most likely occur in Washington DC.,as there are no surgeons experienced and qualified in the paediatric population within Canada.

Right now, we are unsure if OHIP is willing to cover this procedure. Out of pocket cost for this surgery is $60,000 upfront at the time of booking. This cost doesn’t include things like flights, accommodations, living expenses, etc. As well, Asa and Shanna will need to be there for around the clock care after surgery while she heals., which means time and lost wages for this family. If you can please donate to help this kind loving family and help Maci regain the health every child deserves!