Max’s Mission to Move

Max is our little miracle who was born prematurely at 31 weeks and 5 days.

Unfortunately, during the labour we had a cord prolapse meaning he started slipping through the birth canal and Mum had to be rushed to theatre for an emergency C-section. Unfortunately, Max was difficult to get out, came out lifeless and had to be resuscitated for 17 minutes. As a result, Max sustained a lack of oxygen and, as we found out later, bleeds to his brain. At 10 days, Max had his first MRI which confirmed the bleeds and positioned them well. We were told that the most probable result of this would be cerebral palsy. We were devastated but also unsure of what this would mean to us and Max. After 6 weeks and a day, Max and his twin sister Mia left the hospital. And so, the waiting game began. As time went by, Max was missing his milestones. He wasn’t looking at our faces, babbling, sleeping, or moving like Mia. By 18 months, we became aware of most of his complications after such a traumatic birth.

Max has cerebral palsy which affects all his limbs – he can’t sit, walk, kneel or stand on his own. He can’t move his hands well either. He must wear splints as he has a high tone in his muscles meaning his feet are in wrong positions. Max attends weekly private therapy and goes to charity therapy sessions, and we also pay for him to have a couple of weeks of intense therapy annually abroad, where he works for roughly 5 hours a day. His NHS physio sees him every 6 weeks or so. We buy him specialised equipment to help him sit, bear weight and be safe around the house. He has a special bath seat, a meal chair, a chair to chill and a chair to help him travel during a flight or to be in a swing, as well as a specially adapted car. We bought him a special trike to try to ride on. Recently he was also diagnosed with dystonia – which causes involuntary movements. This means some of the forms of treatment are now more limited for Max.

Max has Cortical Visual Impairment, meaning his brain cannot process the information the eye passes to it, hence he is declared as severely sight impaired. Initially, he would only see bright lights, then the yellow and red. Max must wear glasses as without them his brain works 3.5 times more to make out of the image in front of him and at a short distance. He requires constant interventions and use of appropriate resources to help him learn and play.

Max is technically non-verbal but is desperate to communicate. He can say ‘yes’ and ‘no’. We just managed to find someone private that has time and experience of working with children that require alternative means of communication. The NHS only see Max once every 12 weeks.

The reason why we set up this fundraiser is that Max is unable to care for himself. He requires special bathroom and sleeping arrangements. We have applied to the local authority for grants to adapt the ground floor for him, but they only cover a fraction of the costs (and only after the completion, and while they are satisfied that all their requirements have been met). They do not include any provision for Max to fully participate in a family life i.e., move freely on his wheelchair around the ground floor, be involved in cooking or quality family time. They do not take into consideration Max is almost blind and requires space to move around safely, as well as space to store ever growing equipment with him. As parents that simply want to fulfil their role as best as possible, we want Max to be comfortable at home and be able to continue his various therapies. We want to get him more accessible equipment as he continues to grow. Unfortunately, even though we both work full time, we are not able to provide this for Max. With all range of private therapies and a big cost of building work, we are forced to ask for some financial support. Max’s DLA is only enough to pay for speech and language therapist. We would like you to help us create the life that Max deserves to have. Nothing really matters to us more than to see him and Mia access things on the same level.

To prove that we don’t take this lightly, both of us, Mummy and Daddy decided to run the Manchester half marathon on 26th May. This is the first of the fundraising activities we have planned. We also want Max to get involved too. But for now, we’re putting our running shoes on and getting on with our first challenge! We will update you all about our progress.

Max is a happy little adrenaline junkie. He loves things like zip lines, fairground rides and some good old rough and tumble. He has a great sense of humour and finds it hilarious when anybody trips over or drops something - he's always giggling! He has a special fondness for books, ice cream and being outside, even in the rain.

If you would like to get to know Max and us a bit more, check out his Instagram max.cassius.

For any donations, thank you from all of us!!!