A Springbok mascot’s dream comes true

PETA KROST MAUNDER

Daniel, who goes to King David Sandton, was the team’s mascot and clearly brought luck to the Springboks, who beat the visitors 42-39.

Daniel, who suffers from an extremely rare and progressive neuromuscular disease, was “excited, happy and in awe” as he and the team walked onto the field. “I think he just couldn’t believe it was really happening,” says his mom, Lucy-Anne Monastursky. “It was a dream come true.”

In fact, on the morning of the game, this fun-loving bubbly boy was up, dressed and ready before anyone else in the house. “It is very difficult for Daniel to dress himself. This is something I usually help him with,” says his mom. “On this occasion, he did everything by himself, including his socks and shoes. It was a long day waiting for the game to start. Daniel kept asking, ‘how much longer’, literally right up until it was time to go to the tunnel.”

Daniel – who his mother says “is a ray of light with a beautiful neshoma” – was diagnosed on 10 October last year with the life-limiting disease with no known cure or treatment.

He is the fifth patient ever diagnosed at the Great Ormond Street Hospital for Sick Children in London, and is one of only 21 reported cases worldwide of this new spontaneous mutation, which as yet has no scientific explanation.

Daniel was born with this rare genetic condition, but it became symptomatic only at five years old. He has been battling with the disease for two and a half years. While it affects his entire body, his spine in particular is completely rigid and he can’t bend his neck forward. It also affects his heart, lungs and his muscles, and eventually, it will have an impact on his nerves, according to his mother. “Daniel loves sport, and would love nothing more than to run fast and be a sportsman,” she says.

His devastated parents, Lucy-Anne and Alon, are heartbroken, and pray every day for a miracle, but are determined to stay strong for Daniel and his sister, Talia, who is two years older than him and also at King David Sandton.

“As there is nothing we can do for him medically, I decided to do everything in my power to make Daniel’s dreams come true, and to create happy experiences for him and us as a family,” says Lucy-Anne.

As Daniel is a massive rugby fan, the first thing on his list was meeting the Springboks. Less than a month after his diagnosis, Daniel met the Springboks. “I emailed Tsogo Sun as I know that it hosts the Springboks when touring. Daniel and I were invited to meet the team at a private braai at Montecasino on 2 November,” says Lucy-Anne.

“After this initial meeting, I asked if there would be an opportunity for Daniel to run out with the team. Six months later, I got an email from Tsogo Sun and SA Rugby inviting Daniel to be the mascot.”

SA Rugby was concerned about Daniel, and asked if the team should do a slow jog or walk onto the field, according to Lucy-Anne. “Daniel said he was nervous about tripping, and asked if they could walk out. Siya was very obliging and happy to walk out.”

As they were walking out, Daniel said to Kolisi “Congratulations on being the captain,” and he said, “Thank you.”

Daniel told his mom he thinks Kolisi is “very good” and the Springboks are “the best team”. His first words to his mom when he they arrived to join the Sprinboks were, “Mommy, they are SO big”. And after his experience at the game on Saturday, he was a little concerned about whether he had done a “good job” or not.

“When Daniel went out there on the field, I felt immense pride,” says his mom. “I think it must have been pretty scary for Daniel, but he didn’t hesitate and embraced every second. I wish I was as brave as him.

“With 55 000 people in the stadium looking at my boy, and people from all over the world messaging me afterwards to say that they had seen Daniel on TV, it really was a dream… a dream come true.”

Daniel is also a soccer and cricket fan. And, he enjoys watching wrestling, playing chess, his computer coding lessons, and being with his friends, says his mom.

His school has been kind and compassionate, and accommodates Daniel where necessary, says Lucy-Anne. “The teachers have been amazing, especially the sports coaches who try to keep Daniel as involved as possible.”

However, while this means so much to Lucy-Anne, she says: “As a mom, I am heartbroken. He is my baby boy who I just want to protect. I love him so much. Talia and Daniel are my motivation to never, ever give up, whether I am trying to fulfil a dream or tackling the medical world for treatment and a cure. I will never ever give up on Daniel.”