Freya was born seemingly healthy in May 2005.
At 10 days of age, Freya became very irritable, she was lethargic, pale, limp, and not interested in feeding, she was making an unusual noise, like a grunt type noise!
We took Freya to our GP, she said Freya had snuffles and was happy for us to start Freya with saline drops! This didn't seem a reasonable thing to do as we were not happy with the way Freya looked, so she sent us to our local Children's hospital.
We arrived at the hospital and waited for Freya to be seen in triage, at this point, Freya had become extremely pale and the noises more evident. Finally Freya was taken into the triage room where the staff nurse took one look at her and rushed her through to another room. An alarm was pressed and before we knew it, Doctors were rushing in to see to Freya!
After a while,,a lot of questions regarding my pregnancy, birth and the days before this incident, Freya was transferred to the PICU department, we were told Freya was critically ill and they were thinking it could either be a heart problem or an infection.
Freya was extremely ill, the Doctors worked on her to stabilise her for what seemed like forever, she was having seizures and her little body was failing!
Hours later, it was confirmed that Freya had contracted Late onset Group B strep meningococcal septicaemia, she was on life support and fighting for her life! She suffered a massive bleed to the brain and the outlook wasn't good.
Amazingly Freya survived despite the odds being stacked against her, but the bleed on her brain had left catastrophic damage. We were told, Freya's damage would result in a diagnosis of cerebral palsy.
This diagnosis was confirmed a month later, when Freya was well enough to have an MRI scan, the consultant said, Freya would be at the severe end of the cerebral palsy range and the best we could hope for from Freya was that one day she would recognise us!
Many more complex health diagnosis came after, and Freya has all the above mentioned conditions as a result of the brain damage she suffered, including Cortical visual blindness, Epilepsy, Scoliosis etc.
Freya has spent a lot of time in and out of hospital over the years, whether it be admissions due to illness ie: infections, fractures and breaks, seizures etc or for the many surgeries she has required.
Freya recently had a recurring infection (cellulitis) this was ongoing for two years, and Freya was admitted to hospital on 20 occasions due to this, on many of the admissions Freya was also treated for sepsis as blood infections were also evident! She has been infection free for six months, due to a daily antibiotic, which the medics will review shortly, with hope that if she comes off the antibiotic, the infection won't return, but this can't be guaranteed.
Freya is fed via a Gastrostomy and Jejunostmy, she has a special feed and requires numerous medications and supplements throughout the day.