Deandra Newton’s six-year-old daughter Royaltee was diagnosed with spastic diplegia cerebral palsy at the age of two and ever since, her health journey has been a nonstop fight for proper care, treatment and compassion.
Royaltee first began showing signs of the neurological disorder at just five-months-old when she began to have seizures.
Newton said doctors provided an initial diagnosis of seizure disorder, but she pushed for an MRI to determine the root cause of the frequent seizures.
“When she was about three they told me it’s spastic diplegia that falls under cerebral palsy,” Newton told The Nassau Guardian.
“It affects both of her legs.”
Spastic diplegia cerebral palsy is a condition that brings muscle stiffness and tightness and prevents proper mobility.
Newton said Royaltee usually uses a wheelchair to get around and can only manage a few steps on her own before her legs give out due to the disorder.
“She can manage to make a few steps independently but then she’ll just drop, like her legs will just give away,” Newton said.
“She could use her walker and she could make a few steps and go a bit further than she would do independently without help and then she’ll just drop, her legs would get weak.”
Newton shared that Royaltee’s seizures subsided at around five years old, and it was at that point she began to go further with seeking medical help for her daughter.
Living in Abaco, the family began to take trips to New Providence every three months, where Royaltee would see a neurologist and eventually an orthopedic doctor.
Royaltee received medication and underwent several procedures including full-length castings, botox injections and physical therapy.
The doctors told Newton that surgery would be the last resort if the other procedures failed, however, just a few weeks after Royaltee’s castings were installed complications arose.
“When he put the cast on we had to come back in two weeks,” Newton explained.
“We went back in two weeks to change the cast and he wasn’t there. So he told the guy to strengthen the cast until we come back within three weeks.
“I said okay. On the plane back home, I realized that she’s crying and agitated. We can’t figure out why, she’s just touching her legs.
“Being a mother, my instincts kicked in. We took the cast off and the back of one of her heels already had started to rot where the cast was so tight.”
Newton said back home in Abaco, she took Royaltee to the doctor for treatment on the infected heel.
From there, Newton found a doctor in the US, and they jumped straight into botox injections, which costed nearly $3,000 every three months — a procedure that was not easy for Royaltee.
“She would get six to eight injections in both legs and every time I look back at those videos, the way she hollered and screamed,” Newton said.
“But I did what I had to. We saw improvement at first. Then after a while it’s like we went back to zero.”
Newton set her sights on surgery for Royaltee.
Medical professionals in Florida told her that with some physical therapy and exercises, Royaltee would be ready to undergo an Achilles tendon and hamstring lengthening surgery in three months.
But with time running out to raise money to tackle the surgery’s $50,000-$60,000 price tag and Royaltee’s condition worsening, her mother said the situation is taking a huge toll on their family.
“She’s to a point where it’s getting worse because she’s losing movement in her two feet,” Newton said.
“None of her 10 toes move. One of her feet doesn’t move. The next one only could go up and down. Like if you take your hand and pull it up and down in the air that’s it. Her toes can’t wiggle.”
Born prematurely at only 32 weeks after Newton suffered two pregnancy losses and spending nearly two weeks in the NICU following her birth, Royaltee’s parents consider her to be their miracle child and a strong light in their lives.
Along with her mobility challenges, Royaltee’s disability has affected her social life, her education, and her ability to do what the rest of her peers are able to do.
Newton tearfully shared that Royaltee recently opted out of attending a school fun day, as she said she wouldn’t be able to participate in the activities and the games.
The six-year-old also was not able to attend preschool, and during her time in primary school she has faced issues with accessibility in her school buildings, impacting her ability to navigate the campus and use the restroom on her own.
At one point last year, Royaltee was briefly removed from school because there was no one to assist her to the restroom.
Newton said The Bahamas, especially the Family Islands, is not where it should be with providing accommodations for disabled individuals.
“When I take her to the US, over there is way better,” Newton said.
“They have chairs attached to the grocery carts where I can strap her and push my trolley. Even with the shuttle at the airport, the bus has a ramp.
“They are way better with disability support.”
Newton said the difficult journey often reduces her to tears and she finds herself on the brink of giving up, but she can’t stop pushing.
The situation pushed her to post a heartfelt plea on social media, appealing to members of the community to donate to Royaltee’s medical fund.
“I am a desperate mother willing to make sure her child gets the help she needs by any means necessary,” Newton wrote on Facebook.
“My baby needs help, me and my family alone can’t give, but with your support every penny literally counts.”
Anyone who wants to donate can send funds to either Newton’s Royal Bank of Canada account: (branch) 03085 (account) 7166663, or her CIBC account: (branch) 09716 (account) 201780296. Newton can also be reached at 817-7682.
