Little miracle: Stepping Stone’s first young patient breaks barriers to live
Stepping Stone Hospice Children’s Unit welcomed their first young patient, little Lulu, who was born with two holes in her heart.
After opening its doors earlier in the year, Stepping Stone Palliative Care Services’ Children’s Unit officially greeted its first young patient with open arms and a warm welcome on November 19.
Luloyamo Matsinye, fondly known as Lulo, was born with Edwards syndrome (trisomy 18), a rare genetic condition where three cells attach to chromosome 18, causing growth delays that can be life-threatening.
Despite the challenges that came with this condition, the adorable seven-year-old has defied the odds and recently found a new home where she will receive specialised care and the medical support she needs.
Her diagnosis came as a shock to her mother, Fikile Matsinye, who was told at 16 weeks into her pregnancy that little Lulo would likely be born with Down syndrome or Edwards syndrome.
“This condition affects the development of major organs. She was born with two holes in her heart and an underdeveloped brain, as well as a curved palate. Science tells us that most babies born with this condition, if diagnosed during pregnancy, often do not make it to birth alive, and if they do survive, they usually do not make it beyond the first year of life,” she said.
Up until the age of five, Lulo never had any dire complications. However, she started having seizures when she turned five because the part of her brain that is supposed to control her body temperature is underdeveloped.
“When it’s hot, her temperature just keeps rising uncontrollably until she has seizures. We’ve always lived our lives in and out of hospitals because of this. Recently, the seizures have worsened, and the delay in getting her to the hospital has caused paralysis on the left side of her body. I’m confident that now that she’s here, they’ll be able to monitor her temperature more frequently,” Fikile said.
Home away from home
Fikile expressed her joy that her little one was the first patient admitted to the facility and that Lulu would receive the love and stimulation she so desperately needs from Stepping Stone’s highly trained staff.
Sr Margi Bollman, care services manager, said Lulo was their first young patient to be admitted into Stepping Stone Hospice Children’s Unit, but she wasn’t their first young patient to be treated by the 5-star rated hospice.
“We do have other children registered with us, but our children’s in-patient unit wasn’t quite ready for admissions. We’ve had younger children admitted into our adults’ unit, but as far as the children’s unit is concerned, Lulo is our first admission into the children’s unit. It’s a learning curve for all of us,” she explained.
She reiterated that children are different from adults and that one can’t look after them the same way they do adults.
“They often can’t tell you what’s wrong, and they can’t tell you when they are in pain. Our second patient was admitted two days later,” Margi said.
After admitting Lulo, Fikile sent a heartwarming message saying that she would sleep well at night knowing that her child is in safe hands.
Desperate need
With the growing need to offer specialised services to young patients and the increase in intakes, she said they need an intercom for their gate and at least seven auto-folding invisible ceiling fans.
“Being in the unit, we’ve realised that we need a buzzer at the gate so that we know when someone is there. With this heatwave, we would highly appreciate ceiling fans, especially because our children need to be in a comfortable environment. We have six interchangeable beds, and we can currently look after eight children,” she explained.
General donations are welcome, such as soft vegetables for the little ones and solar panels.
If you wish to donate to support the sustainability of Stepping Stone Hospice Children’s Unit, you can contact the entity at 010 442 5059 or via WhatsApp at 083 290 7562.
