Olivia Trecartin’s Facebook page features pictures of an adorable brunette toddler with chubby cheeks and big blue eyes.
Unlike most moms, however, Olivia’s page is completely open to the public. Her daughter Ava needs a kidney.
“Ava was diagnosed at 30 weeks with having Autosomal Polycystic Kidney Disease, ARPKD. She was born 4 weeks early at 35 weeks and was hospitalized until she was 2 1/2 months due to kidney failure, complications due to kidney disease and stability issues,” Trecartin says.
She continues: “In her first year of life Ava was admitted for a total of 11 months.” Ava has been admitted to both Kingston General and The Hospital for Sick Kids in Toronto 22 times. Her stays have ranged from weeks to months long.
ARPKD is a genetic mutation where cysts grow on the kidney, causing damage. It affects about 1 in 20,000 children.
The cyst growth causes the kidneys to become much larger than average, compressing the lungs, stomach, and intestines. At five months old, Ava had her left kidney removed to give her tiny body room to breathe and eat.
Trecartin describes her daughter as a busy toddler who has mastered walking in spite of her health problems, but there are unexpected complications as well.
“In the 4 months she was admitted to Sick Kids following the kidney removal, Ava had a gastric feeding tube put in as she is unable to eat. It will be 2 years this summer since the tube was placed and she has not [eaten] anything orally in that time. The reason is not clear as to why but many children with chronic end stage renal failure are unable to eat,” Trecartin said, adding that Ava “spends a lot of time in her crib because she has to be safe while hooked up to her feeding tube and spends most of her days at home because of her compromised immune system.”
Ava loves watching Dora the Explorer and Disney movies while in her crib for feedings; she especially loves to sing along with ‘Tangled’. For each feeding, she spends about an hour and a half in her crib, watching movies or reading books.
“She loves to ‘read’ any sort of books, has always loved them and will sit there looking through the pages so intently that sometimes you wonder if she is actually trying to read them,” Trecartin says.
The family is searching for a living kidney donor now that Ava is old enough and meets the requirements.
“A donor must be 18-50 years of age, in general good health and be either blood type A or O,” Trecartin explains. RH factor (the positive or negative factor with blood types) does not matter in organ donation.
A potential living donor must pass through several procedures checking for compatibility, problematic antibodies, and any possible health or psychological problems with the living donor before the donation can go ahead.
April 21-28, 2013 is National Organ and Tissue Donation Awareness Week in Canada. Learn more or register to be an organ and tissue donor at BeADonor.ca.
Trecartin can be reached at her Ava’s Angels Facebook page at https://www.facebook.com/AvasJourney .
Photo courtesy of Ava’s Journey page on Facebook