Saul's story

From our small beginnings on the Trevor Mann Baby Unit through to the ‘New Alex’ appeal, we strive to support the children of Sussex throughout their health care journey.

By working with centres such as short break homes, special needs schools and outpatient units, we fund projects which have maximum impact on paediatric care across the local community. This Christmas, we’re raising funds to kick-start our ‘Sussex Giving for Sussex Children’ 50th year appeal, to support a number of children’s services and paediatric centres across the county. 

Parent Joanna Balmer shares her story of how Rockinghorse has been there to support her son Saul…

“Saul is an outgoing young man who charms everyone he meets. In many ways, he is a typical teenager - he loves football, is obsessed with Formula One motorsport and enjoys being with his friends. But Saul is not a regular 14-year-old.

Brain damaged since birth, Saul is non-verbal and completely immobile. He is also tube-fed and has a catheter fitted, so is reliant on others for every aspect of his care.

Despite endless tests and biopsies, we have never received a formal diagnosis for Saul. Day and night, he deals with the constant agony of dislocated hips (we are awaiting his third hip operation) and severe epilepsy. Yet, despite all these painful complications, Saul is always smiling. He handles life extremely well and I am so proud of him.

We feel very lucky that Saul has been able to access the services at the Royal Alexandra Children’s Hospital (the Alex) in Brighton all his life. I remember the ‘old Alex’ and our appointments there when he was small. Lots of the staff have remained at the ‘new Alex’ and they still recognise Saul; some nurses will hear he has been admitted for more tests or that we are in A&E, and will visit to say ‘Hello’.

Just recently, Saul was admitted to the Alex A&E unit when the feeding button in his stomach became badly infected. The nurse immediately recognised us and took Saul to a separate room on the ward, which is specifically for patients with additional needs.

It is a calming space and Saul was mesmerised by the projections on the wall, and the beautiful lights and sounds from the sensory equipment. The infection had made Saul’s stomach very sore and painful, so the nurse used the interactive 3D pain distraction television screen to entertain him while they treated him.

Literally everything in the room has been funded by Rockinghorse. The staff had recognised the need for patients like Saul, and the charity had addressed it by creating this fantastic space. Knowing that it is available to us is priceless and very reassuring.

Around six nights a month, Saul stays at Tudor House residential home in Brighton. Because of his medical conditions, Saul cannot go and stay with his grandparents, or enjoy sleep overs with his friends, and so Tudor House allows him to spend time away from home.

Saul absolutely loves staying at Tudor House, and it feels like a home from home. As his mum, it is very comforting for me to know he is being cared for in a place where staff know him very well and his needs will be met.

One of Saul’s favourite activities is using the touch screen monitors and interactive projector, both of which were funded by Rockinghorse. Saul does not have the opportunity to make any choices in day to day life, however he can choose what games he wants to play on the monitors. And, since Saul has been using the touch screen, his fine motor skills have developed so much he can now physically point to things.

He also enjoys the therapeutic spa baths at Tudor House, funded by Rockinghorse, and he loves spending time in the refurbished garden where he uses the new play equipment. To see him interacting in this way, and enjoying life, is so precious.

I know Saul is one of thousands of children receiving wonderful care with the help of Rockinghorse. From the moment he was born, the charity continues to be invaluable to us – whether Saul is visiting the Alex for emergency treatment or staying at Tudor House for some down time, Rockinghorse is supporting Saul – and me – every step of the way.

Thank you Rockinghorse – and Happy Birthday! Here is to the next fifty years!”

If you’d like to share your story with us, we’d love to hear from you. Call us on 01273 330044, or email cheryl.piper@rockinghorse.org.uk

1967
We’ve been supporting sick children for 50 years
Read more
45,000
Young patients are treated at the Alex every year
Read more
600
Babies are treated at the TMBU every year
Read more
250
Babies are treated at SCBU every year
Read more