Jaxon’s Journey Trust Fund
APM Group have decided to set up a trust fund - jaxons.journey_ in support of our employee Matt McInnes’ son Jaxon, who has a severe form of epilepsy called West Syndrome. The idea is to develop a few fundraising activities throughout the year, with 100% of the donations going a dedicated account, that can be used by the family to help when needed.
West Syndrome causes Jaxon to have seizures that come from the left side of his brain and spread to the right side which has a detrimental effect on his neurons and impact his development. Jaxon is 5 years old and throughout his short life he has experienced countless medical emergencies, ambulance calls, MRI’s, EEG’s, hospital admissions and numerous trials of epileptic medications. He needs round the clock support as he cannot walk or talk yet and continues to have seizures. His many anti-epileptic medications have side effects that are just as debilitating as his epilepsy.
At a neurosurgery conference it was discussed Jaxon may be a candidate for a left hemispherectomy (disconnecting the left side of his brain) to reduce the seizures. We are hoping to get his seizures under control before going down that path.
He is at high risk of developing Lennox-Gastaut syndrome (LGS), which means every seizure he is having brings this horrible syndrome closer by the day.
He has been through more than he should have in his short life, but he continues to fight every day and is slowly making gains.
