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Paisley-Jade

Paisley-Jade was born on the 15th March 2018 at 36 weeks, weighing 5lb 15oz. All was fine until 31st August 2018 at nearly 6 months old.

Paisley-Jade was my youngest at the time that this journey began. She has 6 sisters. We are a big lively family.

Before this journey with ANE began, we had never encountered or imagined that an illness could strike children so rapidly and be so confusing both to our family and to the doctors.

August 31, 2018 – Paisley had a throat infection with a temp of 40°c, she also had flu symptoms, we took Paisley to the out of hours doctors, was given antibiotics & told she would be fine in a couple of days.

 

 

 

4 hours later our world fell apart. 

Paisley started doing random arm & leg moments & making strange noises. Whilst waiting for an ambulance Paisley became expressionless & drifted into an unconscious state. We were rushed to hospital where they initially diagnosed her with meningitis & sepsis.

Luck was on our side, a doctor who likes strange illnesses came to see her. 

By this time Paisley was totally unaware of anything around her & didn’t respond to pain. The doctor performed a lumbar puncture, blood tests and sent her for a CT scan &  MRI.

He had an idea of what it could be as he’d seen it once before.

He spoke with Bristol Children’s Hospital, they were divided on a diagnosis: half said ADEM & the other half said ANE. 

 I googled & hoped to God it was ADEM unfortunately it was ANE. 

Doctor Jonathan treated Paisley-Jade for ANE on his first visit & we can’t thank him enough. We were lucky that Paisley-Jade maintained her own airway. Whilst we didn’t know at the time; she was in a coma. Her heartbeat kept dropping down to 65bpm, setting alarms off constantly. We were taken away & told that the MRI results didn’t look good & we should prepare ourselves as there was only a 10% chance that she’d wake & if she did she wouldn’t be the baby, we knew.  

To our amazement Paisley woke up on the 6th day. A few hours after waking she had a bottle & the next day actual food. We were very lucky, we did have our baby back however there was some changes. She has dystonia & can’t crawl or walk at 17 months old but with physio we are hopeful that she eventually will. 

Oct, 2018:  Paisley-Jade is doing brilliantly however she doesn’t sleep for long periods of time, she’s not as chilled as she used to be & turns her left arm (muscle tone/dystonia) when relaxing. She also has trouble grabbing things with it, it takes her a couple tries. Paisley naps a lot, bless her, but I don’t care if I never sleep again I’m just grateful she’s here with us 

Oct 12, 2018 : Paisley-Jade manages to sit for a few seconds by herself yesterday, I was so proud I cried.

We know as she gets older other neurological deficiencies or physical limitations may show themselves but as of now, she is a typical happy baby. We were also told in March 2019, that Paisley-Jade has the missense mutation of the RANBP2 gene. We are still struggling with this result and will be testing our entire family. 

 Thank you for reading Paisley-Jade’s story.

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