Worksop family with critically ill children receive life-changing new medical technology

Debbie and Andy Mace, from Worksop, have had new technology installed in their home to monitor the critical medical equipment required to keep two of their children alive.

Seven-year-old Kia and Nial, aged eight, both have an incurable genetic illness called mitochondrial disease, or mito, which causes mutations in the mitochondria.

Mitochondria are present in nearly every cell in our bodies and generate the energy we need to live. However, when mitochondria are not working properly, its cells cannot function, which affects the body’s organs and tissue.

Mito can affect people in multiple ways depending on which cells are affected, which can make the condition difficult to diagnose.

Although incurable, there are ways to manage the symptoms. Both Kia and Nial receive vital 24-hour infusions of medication and nutrients, which require around the clock monitoring in case of an unexpected equipment failure.

While the children were being treated in Sheffield Children’s Hospital, the equipment was monitored by an alarm system called Bedside Equipment Alarm Monitoring System (BEAMS), developed by a Chesterfield company Tutum Medical.

But mum Debbie said when the children returned to their newly-adapted home, she and her husband Andy had to monitor the equipment themselves.

Debbie said: “We were constantly listening out for medical devices alarming. One person had to stay with [the children] all the time. No nurses would come out to us as the machinery was too complicated.”

The hospital then put the family in touch with Tutum Medical to see if the family could have their own system fitted in their home, which has now changed their lives for the better.

The family’s BEAMS acoustic monitoring system is made up of two wall mounted monitors, one next to each child, a speaker unit on the landing stairs and a Wi-Fi unit by the front door with its own modem.

Each wall mounted monitoring device constantly listens for specific alarm signals from the critical medical equipment and only alerts the family if there is an issue.

Debbie said: “We feel more relaxed and calmer and we can spend quality time with the other children; we get more sleep and feel less tired.

“We are very grateful and thankful that such a small monitoring device is making such a big difference. We feel reassured and would recommend it to others in a similar situation."