Facing each challenge as they come
Ja’Dei Grant born with bilateral microphthalmia and a cleft lip and palate undergoes sixth procedure; parents appeal for financial assistance as surgeries ongoing
Ja’Dei Grant is doing well physically and emotionally, even though at four years old she is still not speaking or walking, but, rather, communicates and moves about in her unique ways, according to her mother Dereka Grant.
“She is feisty and will definitely let you know what she wants. She is a happy child, and in addition to her continued love of music, she has a new love for toys that vibrate. She has learned that she likes tea and starts every day with it.”
The pre-schooler recently had her sixth surgery to have sclera shells placed in her eye sockets and tubes placed in her ears to drain fluid and hopefully assist with her hearing.
Ja’Dei, the daughter of Dereka and Jarvis Grant, was born with bilateral microphthalmia (a condition in which both her eyeballs were abnormally small) and a cleft lip and palate (birth defects that occur when a baby’s lip or mouth do not form properly during pregnancy).
Ja’Dei is blind. She has no eyeballs in her sockets and needs eye shells to maintain the health and growth of her facial structure.
On January 30, surgeons went in and opened her eyelids, which had been sewn shut, cleaned up the scar tissue they found, put in bigger shells, in what was her sixth surgery, resewed the ends of her eyes and left the middle open to heal as they prepare Ja’Dei for scleral shells to be placed into her eye sockets, which means she will look like she has eyes. It is created to look like the existing eye.
For just over a year, Ja’Dei’s eyelids were sewn shut on doctor recommendatio because Ja’Dei would put her fingers into her eye sockets and remove the sclera shells, which cost $1,000 a pair, that had been placed in her eye sockets to protect the space from dirt and bugs flying in and possibly causing an infection. As her eyelids do not close all the way, the shells served to protect Ja’Dei’s eye socket space.
While in Florida this past week, Ja’Dei was also seen by a doctor who went in and found she had hard wax buildup as well as fluid in her ear. Ear tubes were put in to drain her ears and ensure fluid buildup did not continue.
“These children normally have fluid buildup – but they also did a sound hearing test to see how her eardrums react,” said her mom. “It was found that Ja’Dei is mildly deaf in the right ear, and severely deaf in the left and needs a hearing aid.”
The damage to her hearing is irreversible. Grant said they are hoping a hearing aid will prevent her hearing from getting worse.
Ja’Dei’s most recent doctors ran her parents into approximately $20,000, funds Grant said they had a tough time coming up with even due to financial constraints.
“We were literally at the counter with cards, saying put $300 on this card, something on another card, literally calling people at the last minute to lend us money, which we have to pay back, to get this done along with donations they were thankful to receive.”
Since birth, Ja’Dei’s parents have been public about their need for assistance knowing the medical challenges their daughter faced.
At December 2019, Ja’Dei had already had four surgeries – cleft lip surgery, two eye enucleation surgeries and cleft palate surgery. Those surgeries were just to begin the repairs to the abnormalities she was born with.
Her eye surgeries in 2019 involved removal of her eyeballs along with cysts that grew in place of her eyeballs and temporary implants placed in the eye sockets. The surgery involved draining the cysts and putting in implants in both her eyes, but had an unexpected complication with the right eye. The cyst had ruptured, and debris, which they later learned were blood vessels that were supposed to be growing on the inside of her eye, growing on the outside and appearing to be a cyst, had started to fuse to the bone. The eye had to be removed completely and an implant put in. Surgery on the left eye was put off, so as to not put the toddler under further stress, which meant a second surgery had to be rescheduled, which meant the Grants had to find thousands of additional dollars.
The two eye surgeries, which came after surgery to repair Ja’Dei’s cleft lip, took place in March 2019.
Ja’Dei had surgery again in September 2021 before her most recent surgery last month.
“We’ve been figuring it out, but this one was really challenging because, since the last surgery, everything cost more,” said Grant. “We only came out to go to the hospital. We ate oatmeal every day because we don’t have it.”
The Grants have to return to Florida in a month for more treatment for Ja’Dei and have to stay for another week, which means they will have to find the funds for that, as well as the funds to pay for a hearing aid for Ja’Dei.
In an effort to assist with medical expenses, the Grants have an ongoing medical fund appeal for Ja’Dei on fundrazr.com/JGrant 2018. Donations can also be made to the Scotiabank account in the name of Dereka Deleveaux-Grant, branch: 77115, account number 248852; or at Commonwealth Bank in the name of Dereka Deleveaux-Grant, branch: 21106, account number 7066045112. Anyone wishing to assist by making direct payment to the hospital can contact Dereka Deleveaux-Grant at 242-820-4534 for additional details.
Since her toddler years, Ja’Dei’s mom has described her daughter as the typical feisty child who she said knows how to use her wiles to get what she wants from family members. And of course, her temper tantrums were legendary.
Her mom said Ja’Dei’s personality has only gotten stronger.
“If she does not want to do something, that’s it. She will fight you,” said Grant.
Since the surgery to drain fluid from her ears and remove hard wax buildup, Grant said they have noticed that Ja’Dei hears better and is reacting quicker.
“That could be why she was throwing tantrums or was so speech-delayed,” said the mother.
From the day Ja’Dei was born, Grant has spoken positivity over her daughter. Despite Ja’Dei’s birth abnormalities, Grant has said she always wanted Ja’Dei to grow up knowing that she can do whatever she wants, and that she and her husband are willing to find a way to give Ja’Dei every opportunity.
Since birth, Grant has been telling her youngest child that she can do anything that she wants and to not allow her blindness to hold her back, and to not allow other people’s thoughts about her blindness to hold her back.
“I don’t want her to be held back because she’s blind.”
The mother researched all manner of devices Ja’Dei can make use of, so that she can have every opportunity and every advantage possible, because she’s already disadvantaged.
“Whatever it is that she wants to do, I’m here to support her in it – once it’s something positive,” she said.
“Whatever she wants to do, she finds a way, so I am here to make sure that she is able to do it. If Ja’Dei wants to come out of the crib, she does. If she wants us to walk her, because she still doesn’t have the confidence to walk by herself, she knows how to get our attention to get her walk. She does what she wants to do and I’m happy to see her that way, as opposed to being a child just sitting in a corner, suffering. I’m happy to know she’s a feisty child and happy child.”
Struggling for every dollar to give their daughter the best care they can, Grant said the financial aspect is hard.
“I want to thank everyone who has helped so far. Every single dollar counted. And everyone who would like to assist in the future, we appreciate.”
Ja’Dei’s parents know their daughter will need numerous surgeries throughout her lifetime.