Help Marley moo receive unfunded medication!

Marley is a nearly 5 year old scrumptious boy who has had many struggles in his short wee life. All of which he has fought incredibly hard and overcome or learnt to manage in order to be a happy and loveable boy.

In June last year we were shocked to find Marley having a prolonged tonic clonic seizure in his sleep and were rushed to hospital. From there things snowballed pretty quickly and Marley started to have multiple seizures a day, many of which were prolonged and needed emergency treatment. By July they had increased even further and were not responding to medication and Marley had lost his ability to eat, drink, mobilise or weightbear.

We were told Marley had a life threatening form of epileptic encephalopathy and before we had time to wrap our heads around that we were transferred to Starship Hospital as Marley had gone in to status epilepticus and we couldn't stop it with medication.

Since then we have tried many medications and even high dose steroid treatments in an attempt to decrease his seizures and cerebral inflammation. Some of these never worked and others have worked for a short time and then he builds a tolerance to them and we are back to square one. He has had multiple hospital admissions which cause Marley great distress due to his other developmental complications.

He has many different types of seizures and often he has hundreds of these within a 24 hour period. We still have no idea why Marley has developed such an aggressive form of encephalopathy and have been told his prognosis is not good. When he is having many seizures he cant mobilise effectively, eat, drink or participate in life as he once did. He fights hard and often gains his mobility back (but he can only do short distances and very unsteadily) which shows his true fighting spirit.

His seizures are profuse during the night as they are also linked to his sleep cycles and therefore he doesn't get to rest.

We were offered to trial a new unfunded medication (Tilray CBD oil) for Marley moo which has actually provided some pretty great results for him over the past 2.5 months! This is organised and prescribed by his Paediatrican and Starship Neurologist.

Marley is so much more settled, calm and happy because he's having a decrease in seizures. He's more interactive and is communicating non verbally more. He is also making sounds again and even said "mum" once or twice!! He is at times eating soft food which is a total joy for us.

He has been happily sitting in his wheel chair and letting me take him on walks again as he appears to be in less pain. We have also been able to decrease one of his other anticonvulsant medications that he relies on heavily but that he had become tolerant to. By reducing this other anticonvuslant we will be able to reintroduce it when we need and it will hopefully be more effective again.

We were told it would cost between $1000-1500 per month but this has nearly doubled due to the huge doses Marley requires to decrease his seizures and is currently costing us $88/day. We know that this cost will not be viable long term but we are determined to try and keep our darling boy on it for as long as we can in the hope that he remains settled and we are therefore able to make some awesome memories with him.

This is our last medication to try to help decrease Marley's seizures and increase his quality of life.

Sadly we need help to raise funds for this as we can't afford it alone. We were overwhelmed by the financial and emotional support we received with our last page to raise funds for the three month trial. If you would like to donate money towards Marleys unfunded medication we would be ever so grateful.