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Rawiti's Story - A Rare Genetic Disorder

2017 Nov 09, 2020
Lola feeding Rawiti soy formula as he is not able to have breastmilk

"4 days after Rawiti was born he was diagnosed with galactosemia and was admitted to neonatal ICU. Galactosemia is a  rare genetic condition which affects the body's ability to break down galactose (a sugar found in all milk including breastmilk) into glucose. I was heartbroken when they told me I would no longer be able to breastfeed and had no choice as this was damaging his body.

I met Lola & Dylan when Rawiti was 11 days old for his lifestyle newborn photo session. As new parents, they were completely smitten with their little bundle. Lola explained that they had just come home from hospital as Rawiti had been very unwell. Rawiti was suffering from galactosemia, an uncommon genetic condition which meant that he was unable to have breast milk - it was the first time I had heard about the condition. I asked Lola if she could share a little insight into Rawiti's condition to help educate others.

Thank you Lola & Dylan for sharing your special story! I think you are an amazing family!

After getting treatment for jaundice, liver damage and blood clotting issues as well as changing to soy formula, he was on the mend and we were able to go back home. Long term he will be dairy free which is completely manageable and we are just happy he is a healthy and thriving baby now" - Lola, mum to Rawiti

Find out more about galactosemia click here 

My lifestyle newborn photo sessions are usually captured in the comfort of your own home within the first 2 weeks of baby being born. Click here for more information, Belle x

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