My little boy, Kaius, is now 5 years old. He was born extremely premature at 29 weeks and spent 3 months in the hospital due to feeding difficulties, low oxygen saturation, heart conditions, gut problems, and suspected NEC (Necrotizing Enterocolitis) on seven occasions. During his time in the hospital, Kaius underwent numerous x-rays.

Kaius also has an underdeveloped chewing reflex, hydrocephalus, which was detected through eco scans and MRIs during our stay. He has a PDA (Patent Ductus Arteriosus), a heart condition that is under continuous review.

At the age of one, Kaius was diagnosed with cerebral palsy. He struggled with basic milestones, unable to move, roll, crawl, sit up, or walk. At first, I thought this might be due to his prematurity, but his clenched fists, rigid legs, and trunk position suggested otherwise.

Recently, we had a long-awaited review for Selective Dorsal Rhizotomy (SDR) surgery. Kaius was seen as a viable candidate for SDR and is now on the waiting list. This highly invasive surgery requires spinal intervention to cut certain nerves and will require two years of rehabilitation. It will be a challenging but hopeful journey to help Kaius with his trunk control, spasticity in his legs, use of his hands, and, with a little hope, the possibility of him taking some independent steps.

Due to COVID-19 and the restrictions surrounding it, Kaius lost access to his therapies for over a year, leaving him unable to use his legs properly even in a K-Walker. His back has become curved, and he is struggling to open his fists, which limits his feeding and overall independence.

It is therefore vital that we get equipment to help him move his legs and provide him with therapies while we wait for his SDR surgery.

This fundraising is aimed at covering the cost of various therapies, equipment, and, most importantly, the SDR surgery aftercare, which is not funded by the NHS:

SDR Surgery Aftercare: £60,000

Weekly Private Therapies: £800 per month

Electric Wheelchair for Outdoor Use: £11,000

We have also explored and visited the ADELI Clinic in Slovakia and are looking to visit Swim Lab in Lanzarote. These clinics offer blocks of therapy that are very helpful for Kaius. However, he requires at least three of these blocks per year to maintain progress and avoid further surgeries. Each two-week visit costs around £7,000. He would also love to try dolphin therapy, which has shown positive results in other children with Kaius’s condition.

We cannot do this without your help. Our extended family resources have been exhausted on an annual basis.

If, for any reason, SDR surgery does not go ahead, the funds will be used for therapies, equipment, and improvements to meet Kaius's needs as he grows. Please also see the charity policy below.

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.