Bright eyed and bushy tailed, preps are taking their first steps through the school gates this week, but for one Sunbury family the milestone is more important than ever.
Six-year-old Ashleen has had a complicated start to her short life, but her parents Amandeep Kainth and Gurdeep Singh Kainth are proud of everything their daughter has accomplished so far.
Shortly after she was born, Ashleen fell into a coma and was rushed to hospital, where she was diagnosed with an extremely rare metabolic condition called CitrullinemiaType 1 (CTLN1).
The rare genetic disorder leads to the accumulation of ammonia in the blood, which Amandeep said rose high in her daughter.
“Her ammonia went up more than 50 times higher than normal (to) more than 1400, which should be less than 50,” Amandeep said.
Ashleen’s situation was critical, and doctors told Amandeep and Gurdeep that their daughter would not survive.
She went through about 12 surgeries and many complications before the age of two, when she was placed on the waitlist for a liver transplant after both Amandeep and Gurdeep weren’t a match.
“Nearly the end of 2021, she got her liver, which is a really, really precious gift for us,” Amandeep said.
“It gave another life to my daughter.”
Ashleen underwent the nine-hour life saving procedure, but not without plenty of complications to follow.
“Again in 2023, she had another two surgeries related to her liver, and after that, she’s doing really, really well,” Amandeep said.
“Because of her high ammonia levels, she got some injuries in her brain, and because of that she’s in developmental delay. She’s not speaking yet, but she understands everything very well.”
Ashleen started at Sunbury and Macedon Ranges Specialist School on 29 January, and Amandeep isn’t sure who was more nervous; herself or Ashleen.
“I think I am more nervous than her! She’ll do better there, because all the teachers and all the staff members are really lovely,” she said.
“I think she will miss her kinder, she loved that more than anything.”
Amandeep said herself and her husband are blessed with her daughter’s second chance at life, and are forever grateful.
“I know every time when that time comes, I feel so bad that somebody lost their child, that’s why my child got life,” she said.
“I (encourage) people to donate their organs because it can save anybody’s life, and they saved my daughter’s life.
“After that, me and my husband will donate.”
To find out more about how to register to be an organ donor, go to donatelife.gov.au
