Amira and PKU


In September 2012 I gave birth to my twin daughters Amira and Aaliyah. The day after they were born they had their heel prick test done, jaundice check done.  Amira had severe jaundice and her levels kept getting higher and higher so she ended up in the NICU ward overnight to get the help she needed. The next day we got the all clear to go home I was so excited to be finally getting my little girls home to their big brother and father, but the happiness ended when she was just 10 days old we got a call from the children’s hospital at Westmead saying we need to bring amira in for an appointment.

As a mum you freak out, thinking what is going on?! I gave the phone to my mother inlaw as I burst into tears as I knew deep down they wouldn’t of made this call for no reason. My mother in-law came inside and told me I need to sit down – Amira was diagnosed with Phenylketonuria also known as PKU. The doctors said not to look it up as it will only freak you out more, but as someone so curious to know what it is as you have never heard of it before you look it up anyways. I burst into tears even more blaming myself for this happening not knowing that it’s inherited by genes and can’t be prevented finding out that your child can’t eat and drink what you and the rest of the family eats and drinks is like a shock no meat no fish no chicken and all other extremely high protein foods can’t be eaten either.

You stop and think how can this happen it’s just not fair but there is nothing you can do to change that. Amira started off with 2 grams of natural protein a day and now at the age of 2 she is allowed 12 grams of natural protein a day now. As trying as this was, I would stop and look at my little girl and think how it’s affecting her the most she has no idea the road she’s in for as she grows up so I took a deep breath and said we can do this, we will do this together.

It’s been a bumpy road with Amira. When she gets sick her blood tests would rise so high and would set us back and would have to take baby steps working our way up again. Yes it has been bad but also has been easy but when it’s time for the next step for her pku supplements. It is going to be a long journey but we can do it. The hardest thing at her age now, 2 years old, is meals I make things similar to our meals but she knows it’s different and refuses to eat but we just keep trying and she will eventually eat her meal. Just like another illness it’s hard at times you feel like your stuck and can’t move but there is always light and the end of the tunnel