Funds for Bobby and Ryan's needs

Bobby and Ryan were born two months premature in 2004 (Bobby) and 2009 (Ryan). Due to complications at birth and their prematurity, they suffered brain damage known as bilateral periventricular leukomalacia. This condition occurs when the blood supply to certain areas of the brain is cut off, causing damage to the white matter. The periventricular area is responsible for processing signals, and this damage has resulted in spastic quadriplegic cerebral palsy.

Bobby is also registered blind due to cortical blindness, meaning that while his eyes are functional, the signals from his eyes cannot reach the part of the brain responsible for processing visual information.

Bobby’s Journey

Bobby can crawl using a mix of commando-style crawling and a bunny-like movement, pulling both legs along simultaneously with little independent movement from them. He is able to sit in a "W" position, where he sits between his ankles while kneeling. Recently, Bobby has begun assisting with transfers in and out of his wheelchair and onto a bench. He can bear weight and take a few supported steps when his feet are positioned for him. However, due to low trunk tone and poor head control, it is unlikely that he will progress beyond assisted transfers or walking with the aid of a K-walker, though this remains a long-term goal.

Ryan’s Journey

Ryan experiences significant tightness in his legs, which restricts his movement and limits his progress with physiotherapy. He is unable to sit or stand and crawls by pulling himself forward with his arms while lying on his stomach. His legs have minimal movement and tend to tighten further during activities, pulling inward and crossing at the knees. This not only makes it challenging to change him but also causes discomfort and pain. These issues have also contributed to hip development problems, and Ryan is scheduled for hip surgery once he recovers from his Selective Dorsal Rhizotomy (SDR) surgery.

What We Are Fundraising For

Ryan’s SDR Surgery

Ryan requires surgery to address the spasticity in his legs, known as Selective Dorsal Rhizotomy (SDR). Unfortunately, Ryan does not meet the strict NHS funding criteria for this operation, so we must self-fund the procedure. It is important to note that we are not paying for private surgery but are covering the same cost the NHS would pay.

SDR is a spinal surgery that involves cutting specific nerves to reduce the tightness in Ryan’s muscles, alleviating spasms, pain, and restrictions. His physiotherapist believes that this surgery will allow Ryan to reach a similar level of mobility to Bobby, with the potential to work toward walking with a K-walker or other aids.

Initially, the surgery was estimated to cost £12,000. However, Ryan has been accepted at Alder Hey Children’s Hospital, where the surgery costs £16,000 due to its more intensive post-operative programme and extended inpatient care. Both his physiotherapist and orthopedic consultant agree that Alder Hey is the best option to maximize the benefits of the surgery.

Post-Operative Therapies

SDR requires at least 12 months of intensive physiotherapy and hydrotherapy, which the NHS does not provide. To ensure Ryan gets the best results from his surgery, we aim to cover the costs of this essential therapy. Most patients benefit from at least two years of specialized therapy.

Therapies for Bobby

Bobby also needs additional therapies. As he grows rapidly, his current treatment for spasticity has become less effective, partly due to his growth and partly because his body is building resistance to the treatments over time. Hydrotherapy would be particularly beneficial for Bobby, allowing him to stretch and move freely in the water. He currently participates in physiotherapy swimming sessions at school, and on those days, his movement and care needs are noticeably improved. Regular hydrotherapy would significantly enhance his quality of life.

How Your Support Will Help

Funds raised will go towards life-changing treatments and equipment for both boys, improving their quality of life and enabling them to reach their full potential. Our priority is to fund Ryan’s SDR surgery, post-operative therapies, and any necessary equipment for both boys to continue therapy at home.

Both Bobby and Ryan have the remarkable ability to melt the hearts of everyone they meet. They deserve a chance to thrive and develop to their fullest potential.

Follow our journey here: https://www.facebook.com/pages/Fundraising-fun-for-Bobby-and-Ryan/1387247028225645?ref=hl

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.