Six-year-old needs $19-million surgery

A Hanover mother is seeking financial assistance to fund a US$120,000 (approximately J$19 million) surgery overseas for her six-year-old son, who has severe cerebral palsy and requires full-time care.

Janeille Jackson-Parkinson said her son, RJ, was diagnosed with spastic quadriplegia cerebral palsy at seven months old, a condition that affects his movement, muscle control and speech.

"He cannot sit up, stand or walk, and he doesn't speak fluently. You have to do everything for him," she said.

Jackson-Parkinson explained that concerns first arose when RJ was about six months old.

"Every time we touched him, he would lean forward or sideways. I said something wasn't right, and we took him to the doctor," she recalled. The diagnosis, she said, was difficult for the family to accept.

"RJ is my first son and his father's first child. It was very hard on us," she said.

RJ has since undergone two surgeries locally, which were aimed at reducing muscle tightness - one at age one involving a tendon release in his ankle, and another at age four targeting tension in his groin. While those procedures have provided some improvement, his mother said doctors have recommended a more advanced surgery overseas. The procedure, known as selective dorsal rhizotomy (SDR), is designed to reduce muscle stiffness by targeting specific nerves along the spine.

"From what the doctors explain to me, the surgery would help to ease the tightness in his body," she told THE STAR. "Right now, everything is stiff, so even simple things are hard for him. I just want him to have a better quality of life."

SDR does not cure cerebral palsy but can improve comfort and make daily care more manageable, depending on the child's condition. However, the cost of the procedure is beyond the family's reach.

"The surgery alone is about US$120,000, approximately J$19 million and that does not include recovery or accommodation," Jackson-Parkinson said. To meet RJ's care needs, she said she had to leave her job in the hotel sector and take reduced hours at a supermarket.

"My son needs constant care, so I had to make that change, even though the pay is less," she explained. Her husband continues to work in hospitality and primarily supports the household expenses. Caring for RJ has also created logistical challenges. Jackson-Parkinson said she used to travel from Hanover to Savanna-la-Mar, Westmoreland, to take him to a special-needs school before going to work. She then returned for him in the afternoons.

"It became too hard and too expensive to manage," she said.

On some occasions, she takes RJ to work with her, keeping him in his car seat while she completes her shift.

"Sometimes he gets tired of the formula, so we have to find other things to blend for him," she said.

She added that while donations from TikTok users have helped with supplies such as Pampers and wipes, the cost of surgery remains a major hurdle. The emotional toll is equally difficult.

"Sometimes he cries and we don't know where he's hurting. That is one of the hardest parts," she said.

Jackson-Parkinson opined that more support is needed locally for families raising children with severe neurological conditions.

"I really sit and wonder what can be done in our country to better accommodate children like RJ," she said. She is now appealing for assistance to help her son access further medical evaluation and, ultimately, the surgery overseas.

"I wouldn't mind if he can just travel and be seen first so we can know what can be done," she said.

Persons wishing to assist Janeille Jackson-Parkinson pay for surgery for her son RJ, may donate to her GoFundMe at https://gofund.me/320d0380.