Child with rare condition becomes celebrity “kindness hero”

A seven-year-old child who cannot talk due to an extremely rare condition has become a mini celebrity with a kindness campaign.

Shaina Shishler is lovable and engaging and though she hardly talks, her innate kind-heartedness and sweet nature speaks volumes.

The youngest of eight siblings, Shaina has a disorder that damages the nervous system and is progressive. It is called BPAN – beta-propeller protein-associated neurodegeneration – in which iron builds up in the brain and causes a range of serious, often life-threatening problems.

She’s the only person on the continent known to have this condition, and one of a few hundred in the world.

Each day brings with it physical challenges. She has experienced multiple types of debilitating seizures and often has respiratory crises requiring oxygen and hospitalisation. She can say only a few words, and needs help to dress, bath, and eat. Hatzolah is on speed dial on every cellphone in the house.

Shaina remains cheerful, sparkly, and spunky, say her parents, Rabbi Ari and Rebbetzin Naomi Shishler, who founded and run the Chabad of Strathavon Jewish Life Centre in Sandton.

In a bid to find meaning and make sense of her serious condition, the family took comfort in her special ability to “elicit happiness” in others. They launched a heartwarming campaign aptly called #AKinderWorldNow to help turn her illness into a faith-affirming quest.

“We understood that Shaina’s role is to coach people to be kinder,” said Shishler, who believes his daughter to be acutely attuned to others. They had special “business cards” printed for their non-verbal child, which they called her kindness coupons.

The card introduces her as a “super-rare kid”, and explains that she doesn’t speak due to her condition. It says, “Thank you for being kind to me today, please pass this card on to someone else to spread kindness in our world.”

“People are deeply moved. They want to know more about Shaina and her medical condition. We hoped these cards would ease her interactions with people,” he said. “We hadn’t anticipated how much her cards would inspire them.”

Her kindness coupons were so well received, they decided to print cards for her friends to share. These cards start by saying, “I’ve been inspired by a super-rare kid called Shaina”.

The campaign has been launched at various schools. She has handed cards to celebrities, musicians, and politicians, and inspired a fellow BPAN friend in Vermont in the United States to do the same at her school. Shishler said the family is slowly involving other families of children with severe challenges to build a global network of kindness ambassadors.

Since Shaina’s diagnosis, much of Shishler’s teaching has centred on the life lessons gleaned from his journey with his daughter.

His blog is titled “Shaina’s Brocha – The blessings, lessons (and challenges) of living with a BPAN child.”

“She’s the kid who smiles within seconds of invasive medical procedures. She wakes up with a grin, and beams through most of the day,” writes Shishler in his blog.

Her language is music and dance, and she has a favourite YouTube playlist. Her face lights up when she hears a familiar favourite song, instantly aware of the words, clapping hands, and demanding the same of everyone in her presence.

Her teachers at Torah Academy Nursery School say she brings out a kindness in her peers, and is drawn to them when they are upset. “Shaina captures hearts wherever she goes,” said her school facilitator, Abi Berkowitz. “Just being in Shaina’s presence will uplift you and bring you joy without her ever having to say a word – living proof that actions speak louder than words,” said principal Leah Lipsker.

Shaina was born seven weeks early and was named Shaina Brocha – “shaina” is Yiddish for beautiful and “brocha” means blessing. “Doctors tell us her condition is a case of bad luck, we say it’s divine providence,” said Rebbetzin Shishler.

“She chose us. We share her with everyone because she has so much to give and teach, the ability to bring out kindness in people is truly special,” she said.

Initially, the couple thought her developmental delays were due to her premature birth. However niggling concerns about something more sinister grew with each life-threatening emergency.

Her condition remained a medical mystery and it took five years for the couple finally to receive the diagnosis following genetic testing and uncountable blood tests.

“It was very stressful,” said Rebbetzin Shishler, “We didn’t tell anyone for months, including our other children.”

“Shaina’s journey upended our family. We now prioritise differently, feel differently, and expect differently,” writes Shishler in his blog. “As challenging as this journey is, we feel Shaina’s blessings in our lives every day.”

These days, Shaina has good days when her happiness overflows, but she has many bad days too. She recently spent several weeks in intensive care with double pneumonia, followed by a stomach bug and then an ear infection.

Her favourite singer, Choni G, gave her a wonderful surprise when he visited Shaina once she was discharged from hospital. A video posted on her Instagram of him singing to her reached the attention of Reach For A Dream, which recently redecorated Shaina’s sensory room. The organisation surprised her with another visit from Choni G, having flown him up from Cape Town to give her a personal concert at home.

Shaina’s eldest sister, Chayale, wrote on her father’s blog that the worry never ends. However, she said her sister’s personality, her dancing, singing, laughter, and compassion also never ends.

“Strange as it may sound, after two decades of building a community, this is the first time we have really appreciated how important community is,” writes Shishler.

“Some souls enter this world unable to do for themselves to allow others to share kindness with them. We’re blessed to have one such soul in our family, and we hope she’ll inspire people everywhere to share more kindness.”

Follow Shaina on #AKinderWorldNow.