Think Ammonia: The Stories

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These stories are the real, lived experience of families who have experienced hyperammonaemia and have themes of medical procedures, disability and death. If any of these stories affect you then feel free to reach out to our individual support services by filling out our contact form.

Want to hear from one of our community members, Charlotte Keys, about her hyperammonaemia experience?

Charlotte’s son, Lucas, was born full-term after a healthy pregnancy but after birth started to experience issues that progressively worsened , leading to a life-or-death situation for her newborn.

Watch this video (left) from Charlotte telling Lucas’s story of hyperammonaemia and her recomendations on what needs to change.

Read the story of Rohan Godhania

Rohan Godhania sadly died aged 16 in August 2020. He was posthumously diagnosed with Ornithine Transcarbamylase (OTC) Deficiency when the recipient of his donated liver became seriously ill. If an ammonia test had been carried out, the outcome may have been different for Rohan.

Click the button below to read Rohan’s story:

Hear Phoebe's story of dealing with hyperammonaemia due to late-onset Ornithine transcarbamylase (OTC) deficiency

Julia Campbell tells the story of her daughter, Phoebe’s story of dealing with hyperammonaemia due to an inherited metabolic disorder (IMD) called Ornithine transcarbamylase (OTC) deficiency which presented later on in Phoebe’s life.

Watch this video (left) from Julia telling Phoebe’s story of hyperammonaemia and her recomendations on what needs to change.

Read Olivia's hyperammonaemia story, written by her mother, Emma Peterson

Olivia was born a beautiful, healthy baby, weighing 8lb 4oz. She was feeding well so we took her home the following day. That evening Olivia fed on and off, she was crying a little but newborns do so we weren’t worried. We all fell asleep exhausted. The next thing I knew it was 7am and we couldn’t believe Olivia had slept through the night. She seemed lethargic and wouldn’t open her eyes. Was that normal for a newborn?

Click the button below to read Olivia’s story, written by her mother, Emma Peterson:

Hear from Sophie Hawker, about her son Rory's hyperammonaemia experience?

Sophie Hawker tells her son Rory’s story of experiencing hyperammonaemia due to an Inherited Metabolic Disorder (IMD) called Argininosuccinic aciduria and gives recommendations on why people need to “Think Ammonia!” when patients are deteriorating but presenting as an unknown.

Watch this video (left) from Sophie telling Rory’s story of hyperammonaemia and her recomendations on what needs to change.

Read the story of Elliot Peters

In March 2018, we were extremely saddened by the death of Elliot Peters, 14, who became suddenly and seriously ill before being diagnosed with Ornithine transcarbamylase (OTC) deficiency. His mum, Holly, is dedicated to speaking out about Elliot’s story to raise awareness and prevent more deaths.

Click the button below to read Elliot’s story:

Hear from Kate Vinokurov who tells her son Etan's story.

Kate Vinokurov tells her son’s story. Etan lives with Ornithine transcarbamylase (OTC) deficiency which means his body can’t get rid of the ammonia that builds up as a natural part of the metabolic process.

Watch this video (left) from Kate telling Etan’s story and visit the following link to contribute to her fundraiser: Save Etan

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