So, the very beginning, should have known that my boy was going to be one of a kind - he was born at Nannie's house. Nevertheless, he was a beautiful healthy little boy of 6lb 1oz and that’s all that mattered to me!
The first few months passed in the blink of an eye, he fitted right in with the family, his big brothers Taylor & Leo absolutely adored him and both wanted to help me as much as they could, even if it was just holding their baby brother and showering him with kisses! Oakley completed our family.
At around 5 months old, it occurred to me one day that Oakley hadn’t yet attempted to roll over. He wasn’t interested in his play mat and the toys above him, he never tried to reach for the toys and he didn’t like anything being put in his hands, he would just drop the object. So, I called the health visitor who came out to see us and she too shared my concerns and referred him to the paediatrician. By the time we got the appointment the health visitor had been out again and checked if he had made any progress and we realised he hadn’t!
The very first time I met his paediatrician I’ll never forget what she said to me - “you’ve got a long journey ahead!” She was worried about the size of his head and booked him in for his first MRI, which he had in August 2017! She also booked us in for a complex development assessment, which took place in October 2017. At the assessment we were greeted by lots of therapists who we now see quite regularly, each of the therapists took it in turn to have a look at Oakley and what he’s capable of doing, and the speech & language therapist checked his feeding. When they’d finished they all went into a room to discuss their findings. An hour later they came back and told me that we are looking at some sort of disorder/disability. Oakley's paediatrician told me that although Oakley was 13 months old, he was only developing at 3 months old!
Fast forward a month later, November 2017, the speech & language therapist came to visit us at home to check how Oakley was feeding. She was quite concerned that Oakley had an unsafe swallow and advised me to stop breastfeeding! 14 months into our breastfeeding journey and we had to stop just like that - it wasn’t easy!
January 2018 Oakley was admitted to hospital for the first time. He was dehydrated as he stopped drinking! He was put on a drip and we were discharged 5 days later with the advice that if it were to happen again then he would need an NG Tube fitted, so on the 18th January when he was back in I knew what to expect. My baby had an NG put in place to keep his fluids up & I was trained to give him his fluids via the tube!
The community nurse had seen us on the off chance and she was quite concerned that Oakley's lips looked blue and he was really unsettled. This time they did a lumbar puncture, CT scan & EEG to check how his brain was doing and to see whether he was having seizures like they had thought!
On the 19th March I was told Oakley's cerebellum was losing volume.
In May at an appointment with the paediatrician, she told me the news I really didn’t want to hear, the news that would ring in my ears & keep me awake at night.. “Oakley is life limited, he could have 20yrs, maybe less.”
We’ve more recently been told by the neurologist that Oakley has a neurodegenerative brain iron accumulation disorder. The cerebellum is collecting iron causing him muscle spasms. He’s lost skills and he’s not likely to gain any more. We were also told that his life expectancy is going to be “no more than a few more years.”
We’ve still got questions unanswered and we’re currently awaiting results from his last genetic tests to give us a full diagnosis (fingers crossed).
Overall, throughout everything my boy has had to deal with, he is the happiest little man & he’s so loved by everyone who meets him!!