Hello everyone.

Thank you, to you all, for stopping to give time to read a little story about a hero who needs some help from us all. His name is Riley Johnston, or as you might see or hear others call him AKA “Riley Roo”. My courageous and gorgeous nephew, my younger sister Louise’s son.

Riley started his journey in life earlier than his mummy was expecting him, arriving at 31 weeks gestational age. He weighed only 3lbs 14oz. Fighting for his place with us from his very first day. Each hour, day, week past with Riley’s health continuously deteriorating as the doctors struggled to control infections and diagnose what was wrong. He couldn’t breath by himself and needed ventilation for many months. He endured multiple organ failures. He developed hydrocephalus with fluid needing drained from his brain. Every day he was faced with a new battle, another day to armour up against the poking and prodding of attached tubes, injections, bloods, lumber punctures, administering of medication. He is the strongest little solider and most heroic wee man in all our lives.

Riley spent his first 9 Months inclusively in the IC unit at the Ulster Hospital Belfast with admisions thereafter. As much as he grew to love the amazing staff that cared for him on a daily basis, he was delighted to be saying good bye and setting of home with his mum and dad.

Unfortunately, there has been a lot of occasions when Riley has had to be admitted back into hospital. With monumental steps forward abruptly coming to a halt. On one occasion while he had been staying in hospital fighting a cold and respiratory problems he contracted meningitis. Riley was fighting for his life, again. Though, every single day, like the solider he has grown to be, he got stronger and stronger.

The meningitis virus had a detrimental impact and lasting effect on Riley. Although it’s not known for certain this alone caused his conditions. He is faced with daily challenges being profoundly deaf and he is also registered blind with limited vision. One of his most favourite things to do is play with sensory type toys, sensory lights. His mum recently made a sensory room at home fit for a king.

Riley requires a lot of specialist equipment for him to be comfortable and positioned in a way that will not affect his posture or swallowing, but still support his head, neck and body. From birth he has suffered with dystonia, which is a movement disorder, resulting in fluctuating tone and abnormal movements. He has generalised hypotonia (low tone) but dystonia makes him stiffen etc, with regular activities being extremely difficult for him. After consultation it was decided that it was in Riley’s best interest to feed through a feeding tube. The risk of choking is far too great as he is not able to swallow.

Riley enjoys every single day of his life. He always has a smile on his face. Even those times at his lowest, he is the happiest little boy. His mummy and daddy make everyday for Riley better than the one before, making his quality of life everything that it should be and more. Every group, organisation, professional team, advocacy, Louise is involved. Riley’s diary can be pretty full on too most weeks. Appointments for assessments, consultations, care and support plans, cognoctal hearing implants, his new wheelchair, OT equipment. He is a busy man these days!

Which is where he needs our help. Riley needs a car seat that can distribute his body, head and neck weight adequately and hold him in a comfortable but appropriate position, supporting his head and neck at all times. Car seats can not be funded through the NHS. Occupational Therapy would have been Riley’s first avenue to apply for a car seat.

Therefore, a new car seat must be purchased directly from a specialised company. The new proposed car seat swivels round on the base it sits upon. One of the functions that will make life a lot easier for Riley. At the moment in his current car seat, it faces forward in a fixed position, which doesn’t offer adequate room for the Riley to be placed in and out of the car seat safely supporting all of his needs. Riley needs his head and neck supported at all times. Because of this, while travelling using his current seat there always must be a person in the back seat next to him travelling with his mum in the car. Although, this hands on support is not always available as and when Riley requires it.

When Riley’s mummy is taking him for his appointments she herself endures anxieties and worry’s. Even with the support of another person in the back with him. Travelling is reluctantly kept to a minimum to eliminate any safety risks or discomfort to Riley. His mum would certainly grow in confidence driving alone with Riley knowing he is completely safe in the back and comfortable in his seat.

Not only would the car seat make a difference in Riley’s daily living in context of travelling to his appointments, it would further open up opportunities to travel to the many things that Riley would enjoy. Swimming, an aquarium, planetarium, sensory groups. His access to further resources to be socially involved in his local community and surrounding areas would be life changing for him.

I have set up a just giving page to collectively try to raise enough funds for Riley to be assessed by a specialist company supplying car seats for disabled children. For any adaptions to be made to the chair, and that Riley’s needs are fully supported whilst travelling.

There are many ways that you can help. You could like this post if you see it on social media. Sharing the post with your friends on your timeline or other social media platforms. Commenting on the posts to say Hi! Making even the smallest donation if you are in a position to do so. Every single little gesture is welcomed, it makes a difference, and is received with so much love and appreciation.

From our family to yours,

Thank you, thank you to you all.

#Rileysjourney 💙