A bed for James

James was born premature in 2018, weighing 665g. James spent six months in the ICU due to developing a grade four haemorrhage on his brain, this continued for a couple of days resulting in post-haemorrhage hydrocephalus. James’s time in the ICU was spent recovering from sepsis, kidney issues and apnoea’s, bradycardia and tachycardia problems. James then went under a brain operation to washout the haemorrhage and perform an endoscopic third ventriculostomy at the same time, a month after James needed a lifesaving brain procedure and a shunt fitted to treat hydrocephalus.

After James’s time in hospital he continued to recover at home but his health quickly deteriorated and he needed many shunt revisions and more brain surgeries over the years including two Foramen magnum decompressions with the second brain surgery, having a stent shunt inserted into James’s brain, currently both devices keep him alive. James has also been through many other operations including open surgery for a partial Nissan fundoplication, operation on his oesophagus for a rare polyp and damage caused by an NG tube that James required three years before his PEG insertion upon others.

Due to James’s severity of needs - he is severely visionary impaired, nonverbal, unable to eat and drink due to a high risk of aspiration. He is unable to communicate, has little understanding and needs care 24/7 James is currently needing lots of different equipment to help him thrive that we are unable to fund as we are currently James’s full time carers. James has a range of equipment to support him including a walker, an activity chair, splints, bathing aids, seating aids and a wheelchair.

My dream for James is for him to reach his maximum potential in life, using different aids to help him independently explore the world in his own way. Our family is currently split up when we are out due to the risks to James being too high. I have moved six times in six years due to the severity of his needs and the equipment that keeps growing.

I would like to be able to sleep peacefully knowing James has slept in an adequate bed, fully supporting his needs and health in hospital as he is unable to use any NHS bed due to safety risks of head injuries and health risks.

Please help us give James the equipment he needs so he can thrive in life.

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.