Supremely talented and extremely ill – Sim twins fight on

If you look at David and Nathan Sim’s paintings and drawings, you would be amazed to learn that the artists are 11-year-old twins. It’s clear that they are talented and have so much to offer the world. Indeed, “art is their happy place”, says their mom, Loren Sim. Yet, at the same time, they and their family are facing an enormous challenge: both boys are very ill, with no cure and a poor prognosis.

“The simple explanation is that Nathan and David are in full intestinal failure,” says Loren. “Their digestive systems don’t work. They aren’t able to eat at all, not even a morsel of food, as they cannot digest it and it causes unbearable pain. They haven’t swallowed food for four years now.

“Their health is a journey that no parent should have to share and no human being should have to endure,” says Loren. But “we’re a strong unit, and we fight on as best we can”. The twins are essentially home-bound, but still see the world in all its beauty and dimensions.

Going back to the beginning, Loren says, “Russ and I are happily married. We’re blessed with three spectacular sons, Jesse (24), and our identical twin boys, who were a big surprise.” They live in Johannesburg.

Russ is a full-time karate instructor and international World Karate Federation referee, and Loren owns her own bookkeeping and accounting practice, “which allows me to work from home and be the full-time caregiver to Nathan and David, which is a 24/7 job”. Jesse is a South African national athlete who runs his own karate schools, teaches private karate lessons, and is studying for a BCom Financial Management.

The twins were born at 32 weeks, relatively healthy, with regular premature baby issues. “Once discharged, both boys struggled with their digestive systems and every doctor told us that it was purely a premature baby issue and would resolve itself. Thankfully, our phenomenal GP, Dr Michael Setzer, insisted that David, who seemed to be struggling much more, be biopsied. Nathan was biopsied afterwards.

“That biopsy literally changed our lives forever. It felt like we had been hit by a cricket bat,” she says. The list of diagnoses is long: Chronic Intestinal Pseudo Obstruction, Chronic Full Intestinal Failure, Ehlers Danlos Syndrome, Gastroparesis, POTS, Eosiniphiliac Gastroenteritis, and Osteogenesis Imperfecta.

Their systems don’t allow for the breakdown of food and “they are unable to absorb nutrients from either food or enteral feeding [through a peg into the stomach]. They have a central line through their hearts called a Broviac, and are nourished through their central nervous systems with TPN [total parenteral nutrition]. A Mickey button allows enteral medicated feeds to enter their stomachs to protect their livers from the damage of TPN.”

This process is extremely dangerous, and Loren has had to learn how to manage it and prevent sepsis, “which is a very real risk. The TPN bag has to be changed daily at home under sterile conditions. The twins have been on TPN for four years, and have had no line infections in that time.” The family has no nursing care or domestic help, and Loren is responsible for all their care.

David has had his large intestine removed, “as it was causing him immense pain and was swollen to more than twice the normal size. He has an ileostomy bag”, says Loren. “Nathan hasn’t yet progressed into needing this surgery, but it’s definitely a ‘when’ not ‘if’ scenario.”

The boys live in pain, which the family try to manage on a daily basis. “If we go out, which is very seldom as they have no immune systems, they are in wheelchairs with drips and their related pumps. Their ankles have collapsed because of Ehlers Danlos Syndrome, so walking is very painful, and they are also starting to have insufficiency fractures.”

For this reason, they spend almost every day at home or in hospital. Their days are filled with “procedures, doctors who have become like family, and hospital staff who love them as much as we do. We spend our days ensuring that, ultimately, every day we have with them is a happy one. They are two highly-intelligent little souls, who just accept the lot they have been dealt with grace, humour, and bravery.”

They are home-schooled with a tutor, and have an art teacher. “Nathan and David aren’t just talented artists, they are so talented, people request commissions from them,” Loren says.

During the pandemic, Reach for a Dream blessed Nathan and David with iPads, and their big brother bought them a PlayStation 4. “They spend many hours on these two devices learning and keeping themselves entertained, safely wrapped up in their blankets with their beautiful cat, Ryo, who they adore.”

Meanwhile, “their big brother is a human like no other”, says Loren. “I know that Russ and I wouldn’t have got through some of the darkest moments without Jesse and his positivity, support, and absolute devotion to his family. He’s an extremely focused, hardworking, loyal, family-always-first human. His girlfriend, Tamzin, is also extremely devoted to our twins.”

A normal day in their home includes scrubbing up a few times a day, almost like going into an operating theatre. Each day includes medicine, pain relief, emotional support, enteral feeds, ileostomy care, little sleep, night shifts, and a routine that doesn’t change.

What keeps them going are “a strong marriage, and love and devotion to our three boys. We gain our strength from each one of them. Special needs parenting is a life filled with solitude. It’s insular, lonely, and a life many don’t understand. Please teach your children love and kindness towards the special needs community,” Loren says.

“On many occasions, you will find me crying behind closed doors, but then you’ll see me singing and laughing with my boys five minutes later. We’re not a religious family, we’re a family of deep faith.”

Loren emphasises that she doesn’t want her boys to be known only for their illness, but also for their talent, personalities, and the bright light they bring to the world. “We have no idea what tomorrow will bring. What we do know is that we have a life filled with love. It’s a life built on morals, values, kindness, and a will to fight like no other.”

• To support the Sim family, contact Loren on landrsim@absamail.co.za or 083 601 1487.