Sophia

This is Sophia – our wonderful teenage daughter. She dreams of being a stage actress, a journalist, a disability advocate, and a mum. With her resilience, talent and tenacity, she will no doubt achieve all four.

Unfortunately, Sophia has spent many years battling illness and attended far more hospital appointments than any 17 year old girl should have to in order to figure out the root cause of her health problems.

Condition

Three years ago, Sophia began to lose the ability to walk. After a great deal of investigation, she was diagnosed with an extremely rare genetic joint condition called Progressive Pseudo-rheumatoid Dysplasia (PPRD). Skeletal dysplasia is a general term for over 700 conditions that affect cartilage and bones, but PPRD is a one in a million diagnosis. Sophia’s particular genetic variant is so rare that she is one of only two reported cases in the world.

The condition affects her spine (she has scoliosis,) and all her joints – knees, ankles, elbows, wrists, fingers. However, her hips have been the worst affected and she has been a full-time wheelchair user since summer 2024. If all goes well, she will have two hip replacements some time in 2026.

BRIT School

Despite all of this, she managed to win a place at the prestigious BRIT School for Performing Arts and Technology in South London where she is studying for an Extended Diploma (equivalent to 3 A levels) in acting and theatre.

The BRIT School is the leading Performing and Creative Arts school in the UK. Every year they take 60 students from over 3000 applicants for the ‘Theatre’ strand. Previous students include Adele, Tom Holland, Jessie J, Raye, Blake Harrison and Cush Jumbo. All going well, she will be a student there for two years starting Autumn 2025.

Currently, Sophia uses a self-propelled wheelchair that was provided for free by the NHS. It has given her some independence, and she can wheel herself around on smooth, flat surfaces indoors, but it is quite cumbersome and takes a lot of effort to move on uneven terrain outdoors. Sophia’s condition also affects her wrists and elbows meaning she doesn’t have the strength to self-propel for long.

ACTIVE WHEELCHAIR

To help with her return to full time school, Sophia would benefit from an “Active” wheelchair. She has found the chair of her dreams, a ‘Ki Mobility ROGUE 2 wheelchair’ which is lighter and much more manoeuvrable. When she first tested one out in a Mobility showroom, she said that ‘it felt like an extended part of her’. This chair will also be fitted with a lightweight power-assist battery add-on (called a YOMPER+) to reduce the strain on her elbows and wrist joints and help her overcome obstacles like hills and uneven terrain. Neither of these items are available on the NHS.

The motorised wheelchair will enable Sophia to conserve her physical energy and use it for the demands of the course and will greatly add to her independence to get around the Brit campus without the need for assistance.

If we are fortunate enough to raise enough money for the equipment, we will use the remainder for maintenance and servicing.

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