Valdeen Shears-Neptune
The parents of eight-year-old Kaj Romain, who underwent life-saving brain surgery in Florida, United States, earlier this month, say they are making all attempts to find evidence to show that they did apply to the Government’s Children’s Life Fund in 2013 and was turned away.
They have taken this route rather than submit a new application, as advised by Dennis Cox, interim chairman at the Children’s Life Fund.
Najja Romain and Deena Gonzalez spoke to the T&T Guardian from their son’s bedside at the Florida Hospital for Children, last week, insisting that they were overlooked in 2013, shortly after being told by doctors that Kaj required corrective brain surgery.
At age four, Kaj was diagnosed with epilepsy due to a congenital brain malformation.
His parents claimed that staff at the Life Fund’s offices at the Eric Williams Medical Sciences Complex, Mt Hope, had told them that his condition was not life-threatening, and he was unable to qualify.
On August 12, Kaj underwent surgery after the family received donations from Republic Bank, First Citizens and close friends and family.
“Doctors say it (surgery) was successful. This surgery does not typically offer seizure freedom, but a reduction in his seizure burden which was about 6 to 8 dropping episodes a day even while medicated. Since surgery he has not had any seizures but has developed weakness on his left side and a loss of tone in his neck. He regains strength daily...actually his doctors and therapists are truly amazed,” said Gonzalez.
The couple said they also tried to get help with Kaj’s monthly and educational expenses.
“We have tried all avenues, the Government Special Needs grant turned us down also, citing that they could not ‘establish a financial need’. Then we tried for help with his school fees, which amounted to $4,500 a term and I am still awaiting a response since last year September. You know they really fail sometimes in helping people who really need their help...it just takes too long,” Gonzalez said.
She said Kaj’s expenses continue to exceed the family’s joint income.
It is also ironic, she said, as she is awaiting months of outstanding salary, because the company she works for is currently owed payments from a government agency. Kaj’s medical costs has reached as high as US$1,100 a month. His education had been scaled down to three months a year, because of the frequency of his seizures then, which amounted to sometimes as many as eight “falling down” episodes daily. Kaj had to wear a helmet to protect himself from serious injury. As for their recent request for assistance with travel to Florida, Gonzalez said they were told by staff at the Health Ministry’s office that they do not “offer assistance related to medical travel.”
The Government, though, she said, is very much aware of Kaj’s needs, as a letter seeking assistance, sent in May, had been acknowledged. “We really don’t know who in government to turn to next. But with Kaj’s medical expenses from the surgery still to be determined, we really are drowning here. We know we are going to have massive bills when this is over. I put on a smile for him, because we are happy he had the surgery, but we are living by God’s good graces right now,” she said.
Kaj has been transferred from the Florida Hospital to nearby Nemours Children’s Hospital for inpatient rehabilitation, which includes physical therapy.
In the meantime, Gonzalez continues to lend support to other families through her initiative, Epilepsy Today Foundation TT. It was through her foundation, fundraisers and assistance from family, friends and well-wishers, they were able to raise a substantial amount of the required US$156,000.
“Thanks to Republic Bank and First Citizens for their assistance, our close friends and family. The journey is not over and we are thankful for their support,” she said.
The family expects to return by October 7.
• Anyone willing to assist can contact the family at 678-4224.