…as mother pays over $4M yearly to fight his illness
A person living with a disability are words that does not fit in the vocabulary of 11-year-old Shivkumar Jaggernauth, a former student of Mahaicony Primary School as he effortlessly overcomes his diagnosis of muscular dystrophy, securing 485.79 marks at this year’s National Grade Six Assessment (NGSA) earning a spot at St Joseph High School.
Speaking with Inews his mother, Devitri Jaggernauth spoke of a series of challenging experiences that led to Shivkumar’s ultimate destiny, courageously overcoming them one after the other.
According to Jaggernauth, her son’s journey has been marked by his illness, which has confined him to a wheelchair since 2020 which brought many hurdles in his path.
“My son was diagnosed with a rare disease for which I was told there was no cure. However, I kept my hope and trust in God that treatment would be available soon. His sickness caused him to be in a wheelchair, but that didn’t stop us from moving forward. I was determined because I see the potential he has,” she expressed with resilience in her voice.
Despite the challenges of her son being unable to walk, he was always ready to pursue his academic goals.
Jaggernauth related that she spent significant amounts of money on Shivkumar’s treatment just to see her son feel well.
“I spent nearly $4 million last year on his treatment, and I have to spend the same amount this year. He already completed his fourth dose this year and is awaiting his second dose. Having this treatment should enable him to go forth with his daily life and continue his studies,” she stated.
Jaggernauth, who also has health issues revealed the emotional and physical toll the journey has taken on both of them whilst he was in primary school and exams were approaching.
She stated that God has been a fundamental factor in both their journeys as she was always encouraged to keep pushing.
“He cried every day, and knowing I have health issues, I hid my pain and took medication just to keep going. And he made it through,” she said.
Meanwhile, Shivkumar’s weakness in his arms frequently led to his exclusion from classroom activities, creating numerous barriers in his life.
“Even though the officer from the region [Education Office] asked me to be part of the classroom as an attending worker, the teacher refused to accept me there to assist my son. He had to struggle his way through on his own in class,” the mother recalled.
Shivkumar’s mother, who would constantly juggle through series of turmoil that would rise up in his life relayed that when he entered Grade 5, the said teacher who remains unidentified was reportedly treating him poorly, constantly refusing to teach him though he always had a record of scoring high in exams.
However, this did not pose a threat to the 11-year-old’s academic skills as he continued to defy all odds. On the day of the exam, he bottled up all of his bad experiences and turned it into a positive one.
This, his mother said, her being filled with unimaginable joy upon hearing his marks which served as a testament to God’s unfailing spurt to her and her son.
“I was very happy and emotional at the same time, I never thought I could have screamed so loud with joy when I heard the marks that my son got.”
She added, “I was very scared and wondered if my son’s paper was being tampered with, but God is good and great. I am very thankful for his score, even though my son was emotionally damaged by his class teacher. His attendance was very poor, and because of all the challenges, I had to give up my job and teach him at home for almost three months.”
Not only did Shivkumar have a high score in the NGSA exams but he was also well-prepared and topped his last mock exam, gaining third position in the NGSA exam.
Meanwhile, in a pursuit to steadfastly provide for her beloved son, Jaggernauth has appealed for assistance.
“I will be very grateful if I can get some assistance from the ministry to continue with his treatment and education,” Jaggernauth requested.
Special needs officer
It was highlighted that significant support to the Jaggernauths has been Akiesha Benjamin, the special needs officer from the region.
“If it wasn’t for her, I would have given up a long time ago. She stood up and fought for my son, ensuring he received the education he is entitled to. She made it clear that there is a disability policy and had pushed for the classroom to be downstairs. Without her, we wouldn’t have made it through,” Jaggernauth expressed with gratitude.
When asked about her son’s future goals as he proceeds into this new stage in his life, she relayed that his biggest goal yet is to become a pilot.
Muscular dystrophy is a group of diseases that cause progressive weakness and loss of muscle mass. In muscular dystrophy, abnormal genes (mutations) interfere with the production of proteins needed to form healthy muscle.
There are many kinds of muscular dystrophy. Symptoms of the most common variety begin in childhood, mostly in boys. Other types do not surface until adulthood.
Though there are no cure yet for muscular dystrophy, medications and therapy can help manage symptoms and slow the course of the disease.
