Dying and death are incredibly challenging topics for many to discuss, yet they are issues we address openly.
Katie Simmons was previously a primary school teacher before transitioning into a role as a children’s rights advocate and educator. She now dedicates her time to working with children who have limited life expectancies.
She takes on a distinctive role in a UK hospice where she brings schooling directly to terminally ill children who can no longer attend regular classes. This ensures they do not miss out on education and stimulation, which are crucial for their well-being.
After Katie first started working at Ty Hafan children’s hospice in Sully, Vale of Glamorgan, with the aim of establishing a youth board and promoting children’s rights, her position there was specially created for her.
Although some hospices may have NHS teachers who assist residents or siblings with homework visits, Katie’s specialized position allows her to implement a program for a child either at their home or occasionally within the school setting when they face difficulties and require additional assistance.
The age of her students ranges from three to 18 years old, and although she hasn’t supported an A-level student yet, she does have one who is studying for their GCSEs.
“Kids are surviving more due to significant advancements in medical science,” stated Katie.
If children are living longer lives, then it becomes even more crucial for them to receive an education and obtain some credentials. This will help ensure they feel capable of continuing their journey through life and finding a sense of purpose.
She mentioned that bedridden children might spend most of their time playing games, adding, “you know it’s not beneficial for them.”
‘They do not view their lives as being unfortunate.’
Katie mentioned that she seldom encounters a mindset of “why bother with learning” among the youth she assists.
When working with the children I encounter, they do not view their situations as ‘I am about to pass away.’ Instead, they simply aim to make the most out of their lives.
As you know, they are only kids. They still desire communication. They still crave friendship.
I have a 17-year-old child who is really eager to find a girlfriend, as they still desire many of these experiences. They feel their life isn’t sad at all.
Some kids go to regular schools, whereas those with more intricate needs require alternative forms of education tailored specifically for them.
Among them is 12-year-old Felix Forbes from Llantwit Major, Vale of Glamorgan, who attends Ysgol-y-Deri special school in Penarth.
Born with Miller-Dieker syndrome, he experiences irregular brain growth. According to his mother, Alex, this condition prevents him from walking or speaking, necessitates feeding via a tube, and leads to frequent seizures every day.
Felix was initially introduced to Ty Hafan when he was just four months old, and his family has received continuous support through counseling services, temporary respite care, and a sibling group specifically designed for his younger sisters, Lottie and Maggie.
Around early October, Felix became extremely ill, and his condition was deemed terminal. We were at the hospital where they told us there was nothing else they could do for him, so we were moved to Ty Hafan,” explained Alex.
He managed to turn things around miraculously, though it was a gradual process returning to normalcy. However, he couldn’t return to school as the care plans needed adjustments.
Following her discharge from the hospital, Ty Hafan informed Alex about the potential for Katie to work alongside Felix, prompting her response, “Oh my God, please.”
She mentioned that Felix excelled academically, emphasizing: “It’s crucial for him to receive constant intellectual challenges, specialized tools, and instructors who can motivate him effectively. When these elements are absent, his performance noticeably declines.”
The educational sessions for Felix include “utilizing various devices and interactive elements where he can track lights and hear sounds,” she mentioned additionally.
Alex told Katie that her goody bag purchase was simply incredible.
The emotions run high when we think about Fee’s journey, but her reaction upon entering the house and witnessing his improvement from such poor health, watching him thrive rather than just survive, truly makes us feel supported too.
Susan Southard, who cares for her 15-year-old granddaughter Keira full-time, has similarly experienced the effects of Katie’s influence.
Keira resides with her grandparents in Carmarthenshire and she suffers from several medical conditions. She is both blind and unable to speak, and uses a wheelchair for mobility.
Similar to Felix, she fell gravely sick last year and spent half a year in the hospital following two surgeries and a stint in the ICU.
She was released to receive palliative care, couldn’t go back to her class at Ysgol Crug Glas special school in Swansea, and was then referred to Ty Hafan.
Susan stated that Keira had experienced “a very rewarding life up until her illness,” and further noted, “She attended school every day of the week. She participated in all activities just like the rest of the children.”
Katie would visit and engage in activities such as guiding Keira through pressing buttons to match a sequence of lights corresponding to musical notes, or playing with bubbles, sharing stories, and conducting music therapy sessions.
“Keira thrives on interaction, and she really benefits from activities that involve touch or music,” said Susan.
Keira may require considerable time to establish trust with others, yet she and Katie “had an immediate connection, and Keira felt secure around Katie. From the moment Katie arrived, Keira recognized her,” Susan mentioned additionally.
She mentioned that having someone like Katie “provides some relief since she understands Keira and can engage with her, instead of you shouldering the responsibility alone all the time.”
Keira progressed sufficiently to go back to school, whereas Katie remains engaged, offering guidance on developing new care plans and continues to check in with her regularly.
Doesn’t this become too much for Katie when she deals with children who have such brief lives?
Although she recognizes the pressures associated with her role, both she and fellow employees receive assistance and counseling through Ty Hafan. The satisfaction derived from working with the children surpasses all challenges for her.
Each time I leave after visiting, my heart feels happy since they gain so much from it.
I believe feeling grateful for having had the chance to collaborate and form a strong connection, even if we later parted ways, captures what I’m experiencing after losing someone so dear.
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