nikkita bragg

Our journey🩵

In November 2022, my 7 year old nephew started presenting with symptoms which included; extreme tiredness, extended periods of sleeping, loss of appetite, almost collapsing each time he had a strong emotion e.g. excitement or anger, night terrors, hallucinations and sleep paralysis.

One day he was his normal self, the next day he was like a different child.

After numerous GP appointments, A&E trips and neurological tests, doctors were unable to find the cause as to why he was presenting the way he was, which is when he became an inpatient at Noah’s Ark Children’s Hospital for a short period. 

Extensive and intrusive testing was completed; numerous blood tests, neurological examinations, EEG, CT scan’s, an attempted lumbar puncture with local anaesthetic and finally a lumbar puncture which had to be completed under general anaesthesic. 

In March 2023, my nephew was diagnosed with Narcolsepy type 1 with cataplexy which is a life long disorder.

Narcolepsy is a rare chronic neurological disorder that affects the brain's ability to control sleep-wake cycles due to not enough of the chemical ‘hypocretin’ in the brain.

Cataplexy is a sudden loss of muscle tone while a person is awake which leads to weakness and a loss of voluntary muscle control which is often triggered by sudden, strong emotions such as laughter, fear, anger, stress, or excitement.

Since my nephew’s diagnosis, his consultant has trialled him on medication and lifestyle changes have had to be made to find a ‘new normal’ for him and the family. 

Unfortunately, this medication has not worked for him so a funding application has been put through to trial a different medicine.

Due to long waiting lists and funding, pyschological input for trauma and emotional support is longed to be received which ultimately is having a massive impact on mental health. 

I am running to raise money to help support my nephew and other children; inpatients and outpatients at Noah’s Ark Children’s Hospital recieve the treatment and care they desperately need and deserve🩵🩷