Najja Romain and Deena Gonzalez’s biggest fear for their eight-year-old son Kaj is falling.
While this may be a natural concern for any parent, for Kaj a fall could prove fatal.
The couple has been struggling for the past four years watching helplessly whenever Kaj suffers an epileptic seizure.
And while he was diagnosed with a form of epilepsy that is rejecting medication, the family has placed their faith in God and hope in the recommendations of Florida doctors set to perform corrective brain surgery on August 12.
Through Gonzalez’s initiative, Epilepsy Today Foundation TT, fundraisers and assistance from family, friends and well-wishers, they have raised a substantial amount of the monies required for the trip.
They are still thousands of dollars away from the required US$156,000 needed.
It is not the couple’s first time, though, having to raise such a substantial sum for their son’s care.
In 2012, through their support network, they were able to raise successfully US$54,000 for a trip to the Florida Hospital for Children. Extensive testing (not available locally) revealed that Kaj has epilepsy from a congenital brain malformation.
It was there that Kaj’s, epileptologist, Dr Ki Hyeong Lee, strongly advised a corpus callosotomy or “split brain surgery” to reduce the frequency and severity of Kaj’s seizures.
In a recent interview with the T&T Guardian, Gonzalez, also spoke about the difficulty in securing money for their personal expenses abroad.
Government assistance, she stated, was denied them when in 2013 the family applied for assistance through the State’s Children Life Fund.
According to Gonzalez, they were told by a member of staff at the fund’s offices that Kaj’s condition is not life-threatening.
Kaj’s medical costs have reached as high as US$1,100 a month for medication which Gonzalez said he could not miss.
Their journey:
Kaj’s condition has now proven an obstacle to his continued education.
As a student at Eshe’s Learning Centre at Ariapita Avenue Kaj attends school three months a year. Gonzalez said that was because he had to be supervised constantly.
“We had to make the difficult decision of keeping him home, rather than chance another attack while at school.
“From early on, when his seizures begun increasing, his paediatric neurologist, (Dr Rajendra Parag) advised that we seek an intervention in the United States. His type of epilepsy was intractable or resistant to medication.
“The main seizure is the “drop attack” where he suddenly falls, very violently breaking plates if he was eating or his head crashes into counter tops, tables or the ground. He has had multiple seizure-related injuries and has to wear a helmet most times to protect his head from his falls,” said Gonzalez.
Romain said his family’s well-being could very well hinge on the surgery.
It has become a juggling act for them to maintain their jobs while caring for Kaj at home. Even a simple trip to the grocery is done with great reservation because of the unpredictable and dangerous nature of Kaj’s seizures.
“He is such a sweet natured boy and always talks about the things he is going to do when his seizures go away.
“He talks of becoming a fireman one day, a policeman the other. We have realised he is quite fascinated with large vehicles; especially those with sirens,” said Gonzalez, beaming with maternal pride.
Epilepsy Today’s role
Through the Foundation, the family has raised awareness and assisted guiding other parents down the path their lives have taken. They have hosted marches, donated helmets for other children living with similar conditions.
On July 31, the couple hosted a fashion show, the brainchild of Gonzalez’s mother, Linda Darabie, at Palm’s Club, San Fernando, in the hopes of taking them one step closer to their goal.
Anyone wishing to assist Kaj can contact the foundation at 678-4224.