Help Jahkyron Barclay walk and play football with his brothers.

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Our son Jahkyron was born early 35+4 days at St mary's Hospital not very premature, and my joy and excitement for our second born was snatched from me 4  hours after birth. Everything shutdown inside me and was overwhelmed with sudden fear. I was extremely numb the nurses took him and said he's sick. Eventually a Doctor finally explained  he was too sick but not why?... My baby had to be transferred to another hospital ASAP (Hammersmith).  They had a bigger PICU dealing with babies in his condition. However there was a 6 hour deadline if no improvement was made. The hours went so fast and then he was transferred urgently to GOSH (Great Ormond Street hospital). You can only imagine the fear running through me as a second time mum. I was still recovering from giving birth, I was in shock & numb but without a reaction unlike my family who were in tears. I couldn't bring myself to cry or be sad I had to stay strong for Jahkyron, I was repeating in my head  'HE WILL BE OK'!!.. because he was so strong he was so far. 

Jahkyron had a rocky start at GOSH but with our bonding and his strength he made great progress daily at GOSH. We are so proud of him, Jahkyron was determined to be in our arms and meet his big brother and dad. After his 1 week stay at GOSH which felt like forever he was sent back to St Mary's hospital for normal care. He finally graduated ready to come home to meet his big bother and dad properly. Jahkyron has spent 6 weeks of his life in 3 hospitals but overcame all of his obstacle's to come home with his family.

From his daily hospital appointments with specialist doctors. We noticed at corrected age Jahkyron was not sitting up and was classed as a floppy babies due to low muscle tone in his core. The specialist notice he doesn’t have enough white matter on his brain and this could be a cause of why he is so floppy. This means he shakes and wobbles a lot especially as he is scared or thinks he will fall. So he could not sit up at all without support and quickly needed specialist equipment and physiotherapy to help build his core. Since doing physiotherapy he has built strength to sit up at 12months. He could commando crawl and then to all four crawling. Jahkyron can do steps with support of a walker and standing frame or if you hold him to take steps. 

Fast forwarding to today Jahkyron is a very clever, funny, cheeky and tall 5 year old boy. He unfortunately is not walking yet or can stand by himself unaided his symptoms are Neurological disorder similar to a child who has Cerebal Palsy or a cousin of CP but he still hasn’t been given a full diagnosis of what is causing him not to walk or stand. Jahkyron needs daily Physiotherapy and special equipment to help him stand and walk. So far has been diagnosed with: Global Development delay, Cerebral hypomylenation, Epilepsy, Nystagmus(wobbly eyes), ANSD (hearing impairment) Idiopathic neutropenia. But not yet Cerebral Palsy as he needs more tests to clarify this. We are still waiting for overall diagnosis of what is causing him this delay with his body. Jahkyron is the most determined little boy as he has never let his disability ever stop him from having fun and will adapt his body to join in or play with his brothers or at school. 

Jahkyron's brothers, Jahmase (10) and Jahvonte who is 1 years old, they love to play football together and jahkyron will crawl to join in. Jahkyron needs the money for home adaptations for making a room and bathroom for him and space for his equipment and making it accessible for toilet shower room. To make him move independently his own walker and wheelchair, and a stair lift. We will also being using the money to fund specific medical therapy which will help jahkyron wit