When Nixon was 2 weeks old, his parents Morgan and Jimmy received a call from the children’s hospital telling them to stop feeding him and bring him to the hospital immediately.
Needless to say panic ensued.
The doctor who called said she didn’t want to say anymore because she didn’t want me googling and stressing myself out even more – not possible!”
Morgan and Jimmy sat down with a team of clinicians and was told that Nixon had Phenylketonuria (PKU). A condition where the body has an inability to breakdown the amino acid phenylalanine (phe).
After sitting down with a team of clinicians, the condition was explained, and a course of treatment laid out – the whole ordeal felt like quite a blur to them.
At the time, as Nixon’s condition was managed mostly through diet and he was only on prescription formula at this time, it gave Morgan and Jimmy time to do some research on their own about Nixon’s condition. They wanted to ensure that by the time he transitioned to solids, they would have a much better understanding of what was happening.
Morgan describes the process as a never-ending cycle of weighing and measuring foods, but they have adjusted now.
“We have come to learn that Nixon’s body requires 9gms of measured protein a day through food for growth and development, but any more than that and his phenylalanine levels can spike and it can become dangerous.”
Things like growth spurts and illness can also affect these levels so they take blood once a week to send off to the hospital and can adjust his amount of formula and food accordingly.
Managing Nixon’s diet means that they are keeping him at optimal brain development and function which means he’s an incredibly intelligent little boy!
“He’s not even two and is already talking in full sentences and is great at articulating his thoughts and feelings – even able to tell us when his head is sore and he needs more formula.”
There are certainly tough days. Sometimes when they go out to eat, Nixon will want to eat things that he’s not allowed to have, such as ‘chippies and nuggets’ that most toddlers live off. He is now coming to learn the difference between ‘no, no foods’ and ‘yes foods’.
Nixon is a very playful little boy who is always on the go. He loves running and jumping ‘like a kangaroo’ and is always asking for ‘more fruit please’.
“Whilst some days can be so very tough, especially when blood levels come back high for no apparent reason, watching our boy thrive through his differences is also so rewarding.”