​COVID-19 Stories

We love sharing your experiences and lived experiences of PKU/IEM families. We are bringing you a series of stories of people and families who have had lived experiences with COVID-19. We hope by sharing these personal varied experiences, that they may help other families and individuals that may be affected by the virus and raise awareness of the additional challenges that our IEM community face.

If you would like to share your story with our community please email [email protected]

Rosie, 6 Years Old, PKU

Story written by her mum Paula

Rosie is 6 years old and was diagnosed with classical PKU at birth. Rosie is the first and so far only family member with PKU. We have a 3 year old daughter Cara also. 

We have had quite a journey with COVID. In September 2021 Cara (our 3yr old) tested positive for COVID due to being a close contact at daycare. I tested positive 3 days later and luckily I was vaccinated so had no impact. Rosie and my husband Niall managed to escape it despite being household contacts. I decided not to isolate myself and Cara at the time as it’s just not practical with small kids and I felt we had all been exposed already. It was a shock that Rosie didn’t pick it up! 

On 2nd January 2022, Niall tested positive for COVID. I also tested positive 3 days later so I assume we had delta previously and this was omicron. This time Rosie also picked it up on day 4. 

For the first day Rosie had a high temperature that evening of 39. It came down half an hour later after panadol. The next day Rosie had a temperature but did complain of a headache for the day. An unusual symptom that Rosie had was she said she was itchy all over. This went on for 3 or 4 days and I gave her an antihistamine to help. 

I took Rosie’s bloods on day 3 of her having covid. Results were 524 which is quite high for her, she usually has results between 100 and 200. That day Rosie was extremely emotional and I always know when levels are off. COVID symptoms were all gone but Rosie was irritable and upset over little things. On day 4 Rosie woke up completely back to herself. I’ve no doubt the levels came back into range that day but I didn’t do bloods to check until 2 weeks later. 

Overall, it was fairly mild and Rosie fought it off very quickly. I was worried how she might cope. We had influenza A two years prior and out of all of us, Rosie was hit the worst. She had a high temperature everyday for 9 days! She has also had a lot of problems with ear infections and tonsillitis in the past. It was very reassuring when we had delta that she didn’t just pick it up at all and now that she has had omicron, I’m more confident that she can battle whatever comes next!