I am very lucky to work in an industry that provides such an exciting and rewarding career, I also think that in being in this industry, it is important to contribute to the wider community in some way. One way I contribute is by donating my skills to an association called the ACOCP (Australian Community of Child Photographers).

The Australian Community of Child Photographers is a volunteer organisation of photographers from all over Australia who have come together to form an organisation dedicated to giving the gift of photographic memories to families that have experienced stillbirths, premature and ill infants and children in the Neonatal Intensive Care Units of their local hospitals, as well as children with serious and terminal illnesses. The ACOCP is dedicated to providing this gift to families in a caring, compassionate and heartfelt manner.

A recent shoot I did was very especially touching.

Louis had struggled to live each day of his short life and his mother Aminah, made it her mission to make their time together as precious and comfortable as possible. Louis had just had his birthday, Christmas and saw in the New Year…….. then stopped his fight for life.

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His mother wrote this about his condition;

Louis had a very rare neuromuscular condition called Myotubular Myopathy X-linked.  The X-linked variant of this condition (also known under the umbrella Centronuclear Myopathies) is carried by mothers and affects only boys. It affects an estimated 1/50,000 live male births worldwide.  The great majority still die within the first two years of life however there are now some exceptions, particularly in America where they take a very aggressive approach to invasive ventilation from birth, via tracheostomy and permanent artificial ventilation.

The condition manifests as a defect in the muscle structure causing profound hypotonia (low muscle tone) and weakness throughout the body with the respiratory and swallowing muscles most severely effected. Most boys are born without respiratory effort and have to be resuscitated and ventilated at birth. A few boys like Louis learn to breathe on their own while many have to be ventilated for life.

Most succumb to respiratory complication from the condition as did my Louis and also previously his older brother Marlon who died in 2005. However Marlon died without ever getting a diagnosis, hence the recurrence without my awareness that I am a carrier in my pregnancy with Louis.

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I met Louis and his mum Aminah at Very Special Kids in Malvern. Louis had passed away the day before and their caseworker by chance  had attended an ACOCP presentation I did at the Royal Childen’s Hospital recently, and told them about the service of the ACOCP asking them if they wanted a photographer to capture their last hours together.

Here are some of the photos.

Louis and Aminah

The services of the ACOCP are free for families and funded by the photographers.

For enquiries about our services, membership and donations, please visit our website www.acocp.org.au

Grateful thanks to Aminah for her generosity in sharing these most private of moments.