The story of Allexis
LIFE WITH A RARE DISEASE
My name is Allexis Siebrecht. I was born on October 14th, 2003 with a RARE liver disease called biliary atresia which caused me to be jaundiced as a baby. Biliary atresia is a rare gastrointestinal disorder characterized by destruction or absence of all or a portion of the bile duct in the liver. Biliary atresia begins in early infancy and affects about one in every 10,000 to 20,000 infants. I was diagnosed Christmas Eve 2003. At only three months old, I had my first surgery, called the Kasi
Procedure, which allowed me to use my own liver for the early years of my childhood.
Daily life is difficult to manage when you’re battling rare disease. I had to go to lots of doctors appointments, have regular bloodwork and take many medications just to stay alive. I had to follow a special high nutrition diet due to deficiencies in the fat-soluble vitamins A, D, E and K and I had to go to a feeding clinic and take many different forms of supplements — including drinking Boost — to keep me going.
When my condition worsened, I had to have blood and platelet transfusions due to bleeding
into my gastrointestinal tract. I would sometimes get upset because I couldn’t participate in
activities with my family and friends because I could not breathe and was always tired. Finally I
was told that a liver transplant was necessary and I was officially put on the transplant waiting
list on my 11th birthday, October 14th, 2014.
I received my gift of life June 1st, 2015. I am now 1½ yrs post liver transplant. Thanks to organ donation and my donor I am able to honour and embrace life to the fullest.