The Warrior Project: AJ, Spastic Quadriplegic Cerebral Palsy

Here is another installment of ‘The Warrior Project’, a series of portraits of women and children who suffer from mental or physical illness or disability. And oh man, this little man doesn’t let his disabilities stop him at all, what an amazing dude AJ is! I absolutely loved spending time with him and his (quite frankly stunning) Mum Emmy and Step-Dad Marcus. Hes a smiley, happy little soul who brightened up my dreary day immensely, and hes even more special because of the things he overcomes every single day. Here is more about darling AJ in his Mums words.

Aj is 6 (going on 16!!), He is a happy little boy who I wholeheartedly think he believes he’s royalty!

He loves to be outdoors and we never let anything get in our way. I have a custom made carrier so I can carry him on our walks. He likes going up Pendle Hill, walking through trees and being near water.

Aj’s journey began when he suffered significant brain damage after being starved of oxygen at birth.

He was diagnosed with spastic quadriplegic cerebral palsy at 11 months old, the diagnoses poured in in the months and years after. Autism, epilepsy, global developmental delays, registered partially sighted, tube fed… above all on that list has to be his amazing smile and cheeky personality!

AJ spastic quadraplegic cerebal palsy epilepsy autistic child portrait session clickclickbang photography studio portraits colne burnley lancashire
AJ spastic quadraplegic cerebal palsy epilepsy autistic child portrait session clickclickbang photography studio portraits colne burnley lancashire

Aj struggles with involuntary movements and muscle spasms which massively affect his sleep, he is on 3 anticonvulsants but still has multiple absent seizures a day, he’s fed via a tube in his tummy but does enjoy a bag of flaming hot monster much every now and again!

Aj is completely non verbal and is fully reliant on others for all aspects of his care.

He takes up to 8 medications, 4 times a day.

He has recently has a fundoplication done (an operation which tightens the oesophagus around the stomach, to help with a reflux).

AJ spastic quadraplegic cerebal palsy epilepsy autistic child portrait session clickclickbang photography studio portraits colne burnley lancashire

Our biggest worry has always been his epilepsy. In 2015 he was admitted to the paediatric intensive care unit at Royal Manchester Children’s Hospital after a two-and-a-half-hour seizure threatened to take his life.

Feeding has also always been an issue, shortly after his PICU admission in 2015, he had a gastrostomy fitted. Since the feeding tube he’s a new boy. He’s doubled in weight and gained so much more strength.

Aj suffers from recurrent lower respiratory tract infections due to his inability to produce a good cough.

AJ spastic quadraplegic cerebal palsy epilepsy autistic child portrait session clickclickbang photography studio portraits colne burnley lancashire

As to what the future holds for Aj, I honestly can’t answer that.

I take every day as it comes and try not to plan too far ahead, as you never know what’s around the corner. Life is too unpredictable.

My advice to others facing a similar situation is: Just appreciate life. Try not to dwell on what you can’t change. Smile.

And take pictures - lots of pictures!

Our photoshoot with Donna was fun, very relaxed. It was nice to see how you interacted with Aj like you would a ‘typical’ child (some people still talk to him like he’s a baby!) I absolutely love the photos. I love how you’ve captured his beautiful smile and also the bond he has with Marcus. Donna couldn’t do enough to help accommodate us and Aj’s needs. Thank you SO much. Anyone who knows me knows how much I love pictures. They’re memories that I will cherish forever.

AJ spastic quadraplegic cerebal palsy epilepsy autistic child portrait session clickclickbang photography studio portraits colne burnley lancashire

Here are the images from Aj’s session with me and a few from Emmy showing his daily life and favourite things and people. Thank you so much to Emmy, Marcus and of course Aj for trusting me to take your portraits and for sharing your story with me.

If you are interested in a Warrior Project photosession with me, I offer special reduced rates in return for you sharing your story with me and my readers, just drop me a line on donna@clickclickbang.co.uk for more information!