Heyy,

Rochelle here, an incredibly proud mother of a very handsome, cheeky, blued eyed 11 year old boy.

Z was not only born with the most beautiful eyes and awesome head of hair, but also an extremely rare genetic mutation, 'Change in the TUBB2B Gene'. In addition to this, when I was still pregnant, he was diagnosed with Lissencephaly (smooth brain), alongside other medical conditions, including Lennox Gastaut Syndrome.

Despite interventions, daily therapy, various consultants, specialised equipment, incredible team of carers and professionals, and two very dedicated parents, Zachariahs condition is life limiting, and as he reaches his teens, we are living the reality of this more than ever.

The biggest threat to Z currently is his spine, which has been curving since he was born. He has severe C shaped scoliosis. Scoliosis affects not only Zachariahs posture and physical health, but also his respiratory needs, and his organs. It creates chronic pain for Z, especially when not positioned correctly.

To help Z with his scoliosis and hip dislocation he has weekly hydrotherapy, daily physiotherapy, weekly private Physio sessions, 24 postutal care including moulded equipment and sleep systems. Up until last year, Zachariah was also using a standing frame, however, due to chronic pain, and pressure sores this has become impossible.

The next step for Zachariah at this point would be hip and spinal surgery, however due to the complexity of Zachariah's health, he is not fit enough to survive such surgeries. The main reason being that Zachariah suffered with Pancreatitis in 2019, making him vulnerable now for spinal surgery in particular.

The last thing we can try for Zachariah is to try him with a neurological body splint. A company called Second Skin specialise in these, and will be meeting with Z really soon to get his journey started. Unfortunately these special pieces of equipment are not currently funded by the NHS, therefore we are reaching out to our friends and family, and asking if they can help us.

Although we do not yet have a quote, we have been estimated between £3000-£4000. In addition to this Z may need adjustments in the near future.