Shanae is a 13yr old girl who was born at 35weeks gestation and diagnosed with Autosomal Recessive Polycystic Kidney Decease at just 5days old.
From birth to 2yrs old she spent about 70% of her life in hospital with infections, medication changes and problems. She has been living with only 50% kidney function until June 2012 when her monthly blood test showed it had dropped to just 5%. She was admitted to hospital here for constant monitoring until they could organize flights and surgery in Brisbane. 6 days later Shanae and I (mum) packe
d up and left to Brisbane leaving her father and little sister behind, then 2days later she went into surgery to have a tenckoff catheter (port in stomach) put in so that we could start dialysis. 5 and a half weeks later we came home with her own machine so we could do dialysis overnight for 10hours a night. When we got home dad started all the tests to see if he was a match. In December we found he was a match and went on the waiting list for surgery, which has been delayed due to the doctors deciding they wanted to remove a or both kidneys first. Now we have a date, on the 11th of June she will be getting both kidneys removed and her tenckoff catheter taken out and a vascath port (dialysis port in the neck) put in so that we can do dialysis, so her belly gets a break. To give a rough idea of what ARPKD is, it’s a disease which causes the kidneys to be enlarged and full of cysts. It causes high blood pressure, liver and spleen problems, iron and calcium deficiencies and much more. A child’s kidneys are roughly 8cm and an adults 14cm, but hers is currently 20cm each and still growing. Shanae is a tough young girl who has a pretty good and normal life despite all the time off school, being in hospital regularly, and not being able to go swimming, have sleepovers, and having a long list of medications. The cost of travel and time off work is of great concern to the family, who only have one wage and rent and bills to cover while away. Please help support this family in anyway you can. Please email [email protected] for information on how you can make a donation to help the family through this difficult time.
