Callum has a brain injury - please help him have a brighter future

Diagnosis

Callum was born in July 2015 and at 3 months old was admitted to hospital with major seizures. Following a lot of tests we were hit with the devastating news that he had two brain injuries – Polymicrogyria (PMG) and Dysgenisis of the Corpus Callosum (DCC). As a result of these brain conditions he also has epilepsy and has as many as 31 seizures in a day. Callum’s condition also means that he will face a number of unknown mental and physical developmental delays and challenges. Neurologists cannot say how his future will unfold, only that the brain injury will not repair so he will have it for life.

Christmas in Starship Hospital

While Callum was in hospital he lost the ability to feed and swallow - a result of the sedative anti-seizure medications and the debilitating seizures themselves - so he had to be fed by a nasal gastric tube. He also managed to catch a virus and became very sick. On top of this his airway collapsed and he needed high pressure oxygen just to breathe. Callum spent his very first Christmas in the Paediatric Intensive Care Unit (PICU) and his New Year’s Eve was spent having surgery to open his airway. Then, as a result of ulceration from the NG tube on his airway, Callum had to have another surgery to insert a mic-key button into his stomach to be able to feed – and still needs to be fed this way today.

Daily Life

Callum requires 24 hour care and monitoring and is readmitted to hospital regularly. He also has a sleep disorder meaning he only has short naps and wakes frequently in distress. He is connected to a monitor that alarms when his oxygen level or heart rate drops too low and is on a waiting list to undergo more tests. Callum also has overnight feeds through a slow pump to make sure he gets enough nutrition which also needs to be supervised throughout the night.

Callum is unable to communicate so we are using Speech Language Therapy as well as other devices every day. We have also been trying self taught sign language for some time.

With significant physical delays (GDD) Callum is unable to move around by himself and has limited control of his hands. He has also grown into a large toddler and requires a hoist and standing frame. Just carrying him around or doing his exercises is a two person job. Normally only one person is available which has resulted in mum Mel having a back injury.

Treatments

After a long wait, we were granted the go ahead for him to be transitioned onto a special Ketogenic Diet which was developed to specifically treat epilepsy, this has had positive results for seizure control around the world. The diet is extremely strict and painfully time consuming to maintain as every recipe has to be carefully calculated, weighed and portioned exactly.

Alternative therapies have been a key part of Callum’s rehabilitation. We hope to continue these so he can progress with his development. His therapies so far include: Osteopathy, Physiotherapy, Neuro Development Programme, Homeopathy, Acupuncture, Contact Care, Bowen, Hydro therapy, Vitamins to help brain development and immune support.

The Future

It has been, and will be, a long, slow process, but Callum has already shown signs of improvement. He can now roll over but can’t quite sit up ‘yet’ - and he also gives hugs that can draw a tear.

Travelling across the country to hospitals and therapy appointments has taken its toll on our family, especially financially.

Our aim is to support Callum as best we can and to be able to continue with his treatment and therapies which are vital for his development. Every dollar is a magical gift for little Callum’s journey.

Please help Callum have a brighter and healthier future by donating now.

Thank you