Three year old Joseph, along with his mother, grandmother, and half-cousin, was a guest of Darlington FC at the Southport game last Saturday.

Here, his grandmother Amanda tells the story of "Joseph's dream."

I would like to tell you all about my grandson Joseph and why he is so special to us. Joseph is a 3 year-old little boy with masses of curly blonde hair, I feel he has magic powers as everyone that spends some time with him, or watches his journey falls in love with him and admires his determination. Joseph is so very lucky to have the support he does from our family and friends who continue to help him be the best he can be. They have done a wide range of things in the community to raise awareness and to help fund some of Joseph’s therapies and equipment which increase his quality of life. Joseph works so hard Monday to Friday every week, with many different therapies -- most have the approach of being holistic and making his life so much better, we believe Early Intervention is key to maintain and help Joseph progress.

The last year has probably revealed the most progress so far, Joseph can hold his hand up for up to 15 minutes, he is showing signs of trunk control of his body which is enabling him to sit holding on to one of our fingers, he is starting to lift his legs and making the walking motions, he is practising this on a walking frame with two people supporting him. Joseph’s physical changes have turned him into a little boy rather than baby Joseph. Joseph’s cognitive ability has developed hugely he is using a method called total communication, he is picking colours and objects with his eye gaze and referring to his favourite object or colour. Joseph is responding to vibration, he his recognising his environments and objects of reference in each environment. Joseph’s communication has come on so well we recently had a visitor from the London Ellen Foundation. We have been put forward for another brain scan in the hope we will one day have cochlear implants and a hearing little boy.

We have helped Joseph reach these milestones with support from fundraising, what Joseph needs to achieve his milestones, the NHS unfortunately cannot provide effectively and at the intensive rate Joseph needs, so we have chosen to do this privately -- we cannot sit back and let this little boy watch the world go by, he deserves the best and to be included in every activity Joseph is such a sociable little boy who loves to be around children, he laughs and laughs.

Joseph will always have challenges, high tone muscle spasms, and messages from the brain not going to his muscles around his body, pituitary issues that affect his growth and his sodium levels, unsafe swallow and not hearing the world around him, despite this, look at what he has achieved with a little extra help.

Joseph did not have a great start in life and we were left in a very vulnerable place that I would not wish on anyone, this place took us two years to climb out of as a family and focus on the positives and how to make life better for Joseph and his family. Josephs really struggled to thrive as a newborn baby and specialists organised numerous genetic tests, which all seem to come back negative, we were thinking this is good news and maybe they were overreacting to this beautiful sleepy floppy baby boy. Tests soon confirmed that there was a chromosome deletion however that’s all we could call this as Joseph’s chromosome and deletion was so rare there was no one in the world to compare him to. Often common chromosomes deletions are called a syndrome such as down’s syndrome. So, we were still left in the dark but contacted many experts for advice. Joseph very soon developed complications that made us realise that this was going to be very severe.

Within the first year of Joseph’s life he had developed water on the brain, Hydrocephalous and he needed surgery as soon as possible. However, it was not that simple his little tiny body developed a condition that can’t function sodium around his body, and he was losing extreme amounts of fluid that made the operation dangerous -- Diabetes Insipidus. The surgery went ahead after a couple of days and a VP shunt was fitted to drain the fluid safely from Joseph's brain, Joseph was also given a hormone to control his sodium input and output.

Joseph’s mum had a visit from the brain surgeon, he broke us the horrific news, Joseph would never walk, talk, hear, see or make functional movements by himself he would have a very poor quality of life, the surgeon was going off scientist evidence of the brain scan. Joseph’s brain had not grown since he was 5 months in gestation.

The world fell apart for us all, we will never forget this day week or month. I have worked with adults with additional needs most of my life, but nothing could have prepared me for this. We kept ourselves to ourselves and did not really tell people; we could not digest the information and we were hoping they were wrong. We had numerous appointments with many medical professionals, they often used the term baby like Joseph, or he will become familiar with being a hospital baby. It was a bit of a blank, and many outcomes were decided by the professionals based on their past work history of dealing with babies like Joseph.

One appointment sticks in my mind as being a huge corner and a turning point for us. Joseph had an eye appointment that we had been putting off as we could not face any further negative news. This appointment was totally positive, and Joseph had perfect vision. We moved forwards and became stronger.

Moving forward with our little boy and becoming stronger we only allow positive people/professionals in Joseph’s world.

We found a very special lady who listen to us,Tunde Romisc, she specialised in Conductive Education we started to have 1:1 sessions. We also use a private children’s Physio based in Hartlepool The Physio Hub and weekly massage. We find the holistic approach works for Joseph.

Here are more details about Joseph's dream

https://www.justgiving.com/crowdfunding/Josephsdream

Darlington FC would like to wish Joseph and his family all the best for the future.