Help Jahkyron Barclay walk and play football with his brothers

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Our son Jahkyron was born early, at 35 weeks + 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 shut down inside me, and I was overwhelmed with sudden fear. I felt extremely numb. The nurses took him and said he was 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 (Paediatric Intensive Care Unit) for 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 and 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 kept repeating in my head, ‘HE WILL BE OK!’ because he was so strong so far.

Jahkyron had a rocky start at GOSH, but with our bonding and his strength, he made great progress daily. 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 brother and dad properly. Jahkyron spent 6 weeks of his life in 3 hospitals but overcame all of his obstacles to come home with his family.

From his daily hospital appointments with specialist doctors, we noticed at his corrected age that Jahkyron was not sitting up and was classed as a floppy baby due to low muscle tone in his core. The specialists noticed he doesn’t have enough white matter in his brain, and this could be a cause of why he is so floppy. This means he shakes and wobbles a lot, especially when he is scared or thinks he will fall. 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 12 months. He could commando crawl and then move to all-four crawling. Jahkyron can now take steps with the support of a walker or 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. Unfortunately, he is not walking yet or standing by himself unaided. His symptoms are caused by a neurological disorder similar to a child who has Cerebral 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. So far, he has been diagnosed with Global Development Delay, Cerebral Hypomyelination, Epilepsy, Nystagmus (wobbly eyes), ANSD (hearing impairment), and Idiopathic Neutropenia, but not yet Cerebral palsy as he needs more tests to clarify this. We are still waiting for an overall diagnosis of what is causing this delay with his body. Jahkyron is the most determined little boy. He has never let his disability 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 (1), love to play football together, and Jahkyron will crawl to join in.

We are raising money for home adaptations to create a room and bathroom for him and space for his equipment, making it accessible with a toilet and shower room. This will help him move independently with his own walker and wheelchair and a stair lift. We will also use the money to fund specific medical therapy to help Jahkyron with his development.

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.