Little Stephen's Eye Gaze

Stephen is a wonderful 5-year-old boy who loves cuddles, cartoons, and being sung to.

Stephen was born with TBCK syndrome, a rare genetic condition that affects around 100 children worldwide. This is a life-limiting condition that causes him to suffer from epilepsy, hypotonia, and developmental delay. Stephen's muscles are very weak, and he requires 12-16 hours a day on his ventilator to help him breathe.

Due to his breathing issues and seizures, Stephen needs 24-hour care and has not been able to learn to walk or talk. Mum and Dad spend a lot of time with him to develop tools for communication, as we want him to have as much agency in his life as possible. Stephen can say "no" and "mum," which is a massive achievement, and we know that with support, he will be able to do more.

One significant tool we’ve been lucky enough to have on brief loan (for 2 weeks) is eye-gaze technology. This is a device similar to an iPad that Stephen can operate simply by looking at it. The specific device he needs is called a "Tobii Dynavox I-13 Gaze Intera." This model is essential because it works whether or not Stephen is on his ventilator. We’ve tried some of the cheaper models (though none are truly inexpensive), but they can’t track Stephen’s eye movements when he’s on his ventilator, making them unusable for the majority of the day.

This vital communication tool is not funded by healthcare unless the child can demonstrate specific actions repeatedly, such as using it to speak a three-word sentence or repeating a requested action multiple times. But without the time to actually use the device and learn these requirements, funding from healthcare is essentially impossible. For a child like Stephen, this means he will never be given the opportunity to learn.

Our ability to interact with the world and communicate is essential, and it’s something we all take for granted. For Stephen, he needs significant help to do the same things that we all enjoy daily.

I understand how difficult times are right now, but anything you can do would mean so much.

Thank you for taking the time to read this, and take care.

Little Stephen and Family xxx

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.