Cristina Di Corte is 25 years old and suffers from a disease so rare you've probably never heard of it before. Mitochondrial neurogastrointestinal encephalopathy (MNGIE) is an inherited condition that has caused her digestive tract to no longer be able to move food through her body or absorb nutrients from it.
Because of this she can no longer eat or drink but instead receives all of her nutrition, fluids and medications via a central line catheter.
She suffers from excessive weight loss.
The disease causes her to experience severe gastro-intestinal pain and has lost sensation in her lower limbs. She now needs a walker and wheelchair to go out and can no longer work passionately as a hairdresser, her chosen occupation.
The disease also causes a toxic build-up of two chemicals in her blood so she occasionally requires blood transfusions to normalize her blood chemistry.
Because no match has been found Cristina now suffers from thyroid problems, her ovaries have been damaged so she can no longer have children, and she discovered she had osteoperosis when her leg broke in January of 2015, the complications of which she is still dealing with.
MNGIE is a progressive disease that moves at different speeds in different patients. Cristina's doctors have declared her need as urgent due to the speed at which her disease is progressing.
A bone marrow transplant won't cure her, but can stop MNGIE's progress and has the potential to prolong Cristina's life by decades. Because no one in her immediate family was a marrow match, for Cristina to have a future that includes the kind of quality of life we would all want, she must now rely on the kindness of a stranger to donate their bone marrow (aka stem cells) to her.
#HopeForCristina Awareness Campaign and Fundraising T-Shirts
Please visit CityNews Toronto to watch the feature they did about Crisitna's marrow donor drive effforts on the 6:00 o'clock news. A special thanks to Reporter Cynthia Mulligan for spending the time with Cristina to help share her story so that the person who is her marrow match will see her and join the registry no matter where they live.
Common Myths About Marrow Donation
Donating is excruciatingly painful: The majority of donations are now given through a method called PBSC that, for most donors, is almost pain free. They may experience mild, temporary discomfort (flu-like symptoms of fever and nausea) while giving their donations but that's usually the worst of it.
Everyone will find a match in their own family: Only 30% of patients find a match within their own family
Everyone will find a match in time: 70% of patients will not find a match in time.
I'm a rare blood type so I won't be a match: Marrow matches are made through a DNA match, not a blood type. This is why ethnicity matters.
I'm not of Italian descent so I can't help Cristina: Though it is uncommon, occasionally there will be a marrow match between a patient and donor of different ethnic groups so there's always a slim chance you could be anyone's match.
Over 80% of bone marrow donations are now given through
a blood donation process called PBSC that works like this.