The Warrior Project: Portraits of Aj, Spastic Quadriplegic Cerebral Palsy
“Aj, aka “The Prince” is now 8! When did that happen?! I first photographed Aj in January of 2019 (you can see those images at the end of the post!) but after watching him grow and come on in leaps and bounds I knew I had to photograph him again, but this time on location so he could use his badass walker! He was not really in the mood for photos and, although thats normally a bad thing, I think the pre-teen attitude oozing from these pictures is just perfect, Aj is just a regular kid under all his diagnoses! I can’t wait to catch up with him and his seriously photogenic Mum and Step-Dad again for round 3!
And heres more about Aj, in his Mum Emily’s words:
Aj is the happiest, cheekiest, most cuddle-loving little man. He likes to relax on the sofa with his fluffy red blanket, snuggled under your arm with his little toes squished under your legs. Aj also loves a good day out, he enjoys watching trees move, water flow, clouds pass by and sand fall through your fingers. I often joke and refer to Aj as a cat as he loves to find a sunny spot to lay in! For a day out of the house, Aj will either travel in his wheelchair, his buggy or the custom carrier I have had made so I can take him for walks in places his chairs can’t get him! A good example would be Pendle Hill - he loves it up there!
Aj’s journey began eight-and-a-half years ago, when he suffered significant brain injury as a result of being starved of oxygen at birth. This has left Aj with irreversible damage to his brain. Aj was diagnosed with spastic quadriplegic cerebral palsy at 11 months old and the diagnoses poured in in the months and years thereafter. Autism, epilepsy, global developmental delays, severely sight impaired, gastro-oesophageal reflux disease, tube fed, etc etc. Aj struggles with involuntary movements and muscle spasms which massively affect his sleep, he’s often very sleepy during the day and this can affect his seizure activity along with his mobility. Since Aj’s diagnosis of epilepsy, he has been on 3 anticonvulsants which he takes twice a day, everyday. He still has breakthroughs seizures but these haven’t required him to need his rescue medications for a while - yay! Aj’s nutrition comes predominantly from his blended diet which is administered via a tube in his tummy. I blend everything I cook for the family so he eats what we eat, just differently! Because normal is boring, right? Though he is tube fed, he can eat orally sometimes, he does enjoy a bag of flaming hot lobster munch or a white chocolate waffle from the dessert shops! Aj becomes tired very quickly when eating so it’s important he’s fed by someone who knows the signs of when to stop as he is prone to chest infections due to his inability to produce a good enough cough to clear his airways.
Aj is completely non verbal, though he does vocalise occasionally. He ‘shouts’ when he’s really happy and he can give a bloody good dirty look! Aj is fully reliant on adult support for all aspects of his care, he requires 11 different medications administering at five intervals throughout the day. He has a fundoplication in place for 2 years now, this is an operation which tightens the oesophagus around the stomach to help with reflux. Since having this he has been much happier and settled. His epilepsy diagnosis came in 2015 when 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. He spent 6 weeks in Manchester and had to relearn how to roll over, lift his head etc. He lost his sight completely after the seizure and, by the grace of whoever had been watching over him, he shocked all professionals involved in his care when his sight slowly began to return over the coming months. Aj’s sight hasn’t got back to what it was, but it’s a far cry from where I thought we’d be when I were told my baby wouldn’t be able to see again.
I remember wishing for a crystal ball when he was small, I feel I wasted so much of his babyhood worrying about the future and what it could bring. Ive learnt to just take every day as it comes and though I try not to plan too far ahead, I love to have plans for him to make memories and just enjoy life as a little boy. I rarely have to run through his big old list of ‘problems’ anymore, unless he’s meeting a new professional. It’s strange because way back when, I honestly thought those ‘labels’ would dictate his and our lives.
My advice to others facing a similar situation is: If you find yourself worrying too much about what your future holds, try not to worry just for a day. If a day is too much, try an hour. Cry and stomp your feet if you need too…just don’t stomp so hard you get stuck! Enjoy time together. Laugh, smile, snuggle. And take pictures - lots of pictures!
Our photoshoots with Donna are always fun and very relaxed. I appreciate how Donna speaks to Aj as she would any other child, some people either talk to him like he’s a baby or talk over him.
I absolutely love the photos. I love how you’ve captured his beautiful smile and also his moody pre teen personality! It’s amazing to see the change in him from the last photo shoot we had with you in early 2019, He’s grown so much!
Donna couldn’t do enough to help accommodate us and Aj’s needs, even offering to redo the shoot as he fell after a seizure during the shoot! Thankfully the pictures turned out beautifully and there was no need to re-shoot. Thank you SO much. I absolutely adore the pictures of my amazing boy!
And here are the images from our studio shoot way back in January 2019!
