Jayden Thorn was born the 18th July 2010 at 12:56 a perfectly healthy boy with good apgar scores ( scoring done on new born’s to ensure they are alright). The following day we were discharged and happy to be going home two days sooner than expected.
On the 21st I raised concerns to my husband that Jayden wasn’t waking properly for feeds, we want to our local clinic and then local hospital were we were told Jayden has low glucose levels, while trying to correct this he started turning blue and was placed on oxygen and raced to Steve Biko Academic Hospital.
My sons angel then started working overtime, as Jayden had his first seizure a peadiatric neurologist walked passed and she immediately took Jayden’s case and we have walked together since. Jayden was diagnosed with #MigratingPartialEpilepsy, a rare form of epilepsy effecting the entire brain with no known cure or treatment, a week later. As he was so young his little body couldn’t handle the continuous seizures even under sedation would lead to cardiac arrest just seven days after he was born. This resulted in severe brain damage leaving him spastic Quadriplegic Cerebral Palsy. Along with this he was classified #corticallyblind. Our sunshine had a #gastrostomy at18 months to assist with feeding as he kept getting aspiration pneumonia due to the seizures and a #nissanfundoplication at 2,5 years to reduce reflux.
Both operation were life savers as he was able to thrive and receive his medication
accurately. Seizure wise due to lots of trial and error, experimental and costly drugs we were able to reduce them from over 50 a day to under 5 a day. Jayden will unfortunately never develop beyond a 3 month old and will always be fully dependent on us but a survivor and strong willed little boy he is.
He was given less than a year to live but he passed all that. In October 2015 he became a big brother and the bond between them amazed us everyday. In typical big brother style he laughed when she cried and enjoyed listening to her play around him. Though it didn’t happen often, his smile used to light up our lives, Our sunshine forever.. In LOVING MEMORY OF OUR SUNSHINE JAYDEN…