After three surgeries in literally her first year of life – two on her eyes, and another to repair her cleft lip – and more surgeries in her future, Ja’Dei Grant is as feisty as can be according to her mother Dereka Grant; and her sister, two-year-old Ja’Dal describes her sibling as a pretty princess who gets whatever she wants.
Ja’Dei who was born with a number of abnormalities celebrated her first birthday on Monday, and Grant is already speaking “positivity” over her daughter as she wants her to be able to do whatever she wants, and says that she and her husband Jarvis Grant will find a way to give Ja’Dei the opportunity.
Ja’Dei may still be too young to understand what her mom says to her but Grant has already begun telling her youngest child that she can do anything that she wants – 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. I have all sorts of different devices waiting in my Amazon cart, waiting for me to spend the thousands of dollars just so that she has every opportunity and every advantage possible, because she’s already disadvantaged,” said Grant. “Whatever it is that she wants to do, I’m here to support her in it – once it’s something positive.”
In May Ja’Dei had two eye surgeries her third surgery, with more surgeries to come as her parents do all they can to correct abnormalities she 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).
Her eye surgeries at Bascom Palmer Institute involved removal of her eyeballs along with the cysts that grew in place of eyeballs, and temporary implants placed in the eye sockets.
The surgery involved draining the cysts and putting in implants in both her eyes, in a surgery that was anticipated would take approximately an hour-and-a-half but the doctors faced complications, with Ja’Dei’s right eye. The cyst had ruptured and debris (which they later learnt 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 which resulted in a five-hour surgery on the first eye socket. The eye had to be removed completely and an implant put in. Surgery on her left eye was put off so as to not put the toddler under further stress which meant a second eye surgery had to be scheduled within two weeks. The doctors wanted to avoid a situation where the cyst ruptured in her left eye as well. A second eye surgery meant the Grants having to find an additional $12,000 after having paid $34,000 for the first surgery.
For Ja’Dei’s second eye surgery, the surgeon and anesthesiologist waived their fees, which meant the Grants only had to pay for the theater and medicine and other incidentals.
“So, they weren’t true cysts, but were cyst-like in terms of their shape and size, but were actually blood vessels. They removed those and had to remove the eyeballs themselves because they were basically cutting off the blood supply to the eyeballs and they didn’t want the eyeballs to rot inside her skull,” said Grant.
The two eye surgeries came after surgery to repair her cleft lip happened in March.
Ja’Dei currently has implants in her eye sockets but needs scleral cover shell conformers which cost $1,000 per pair, and she has to have a procedure to ensure the implant is in the correct place. The doctor has to go into her eye socket for ocular pressure tests daily on the implant in the toddler for two weeks, to get it in the right place, so a scleral conformer shell can be put in place. The doctor will have to use different sizes every few days. According to her mom, Ja’Dei will need at least need four conformer shells which means another bill of at least $6,000 within the two-week period.
The Grants are anticipating leaving on Friday to begin that procedure.
Ja’Dei will not be able to get implants that look like eyes until she’s two-years-old. In the meantime she’s going to need different shells every few months, followed by revision surgery every two to three years.
Ja’Dei also has to have palate surgery. Her mom is in communication with Shriners Hospitals for Children – Boston, who have told her that when they set the date for Ja’Dei’s palate surgery to close up the hole on the inside of her mouth, nose and throat, that she has to be there for three weeks. Grant said that officials at Shriners have told them they can give whatever they can to the hospital, but they will still have to find the funds to pay for any outside procedures if there are any, airfare and accommodations for a three-week stay.
“They [doctors at the hospital] haven’t seen her. We’ve been communicating via email and through pictures, so they have to see her to say exactly what it is.”
Ja’Dei will have doctors in her life for the rest of her life, but as she celebrated her first birthday yesterday, her mom said she was happy things were “falling into place” and that her daughter attained her first milestone.
“I’m just extremely happy that everything is coming together as I had prayed it to be. Medically the expenses are ongoing – every week someone sends a bill for something. We thought we were done paying for the eye surgery, paying the $34,000 but then here comes a $12,000 bill for a second surgery and we had to find it, but thank God it came. Because even up to 5:30 that morning of the second surgery, we still owed the hospital $1,600, but somehow we were able to pay them in time for her surgery at 6 a.m. I don’t know how we did it, but we did it.”
To pay for Ja’Dei’s medical expenses, the Grants have crowdfunded on FundRazr.com, where they have raised $9,180 of their $40,000 goal from 81 contributors over 51 weeks. The co-owners of Emanji Circus Arts, they have also hosted a number of fundraisers to assist in defraying the cost of their daughter’s medical expenses. Most recently Quinton “Barabbas” Woodside, proprietor of Junkanoo World held a fundraiser from which proceeds were donated to the Grants.
“My husband was there in January seeking decorations, and he had Ja’Dei with him. Mr. Quinton ‘Barabbas’ Woodside saw her and he started asking him questions, and he just called me and said ‘I’m going to have a fundraiser for Ja’Dei’”.
One week ago today Woodside presented the Grants with $3,000 which she said was timely, because they had Ja’Dei’s follow-up appointment the next day.
One year on, Ja’Dei’s mom describes her daughter as intelligent, feisty, spoiled, and a lover of music.
“She is absolutely spoiled which I know I’m going to regret. She feels our faces, so she knows us by voice [and] by touch. She knows when we enter the room. She’s a very intelligent child. If you say ‘Ja’Dei I’m coming to dress you’, she would stretch out her arms. If you say ‘Ja’Dei I’m coming to wipe your face’, she would turn towards you. And she loves music. When the music stops, there is a problem. Or if she’s in her push and is lazy on any given day and she doesn’t want to move herself, it’s a problem, because no one’s coming to push her.”
As she looks back, Grant said that now that the surgeries have begun that everything seems to happen so quickly.
“At first it seems like I guess I couldn’t wait for the surgeries to happen, then everything happened so fast and I’m so happy I had the head to be able to do stuff and be able to talk to people, and be able to ask, and humble myself to accept funds from persons. I thank everybody who has helped so far because things have been falling into place. Money has come exactly when we needed it. I thank everybody for being so supportive. Those who couldn’t help called, or just came out when we had a fundraiser, and it’s been tremendous support. And we still need help going forward.”
She is also proud of her daughter who she says is a trooper, because after each surgery she says Ja’Dei’s right back to herself. But she also says words can’t describe how she feels because she’s still going through it.
Shavaughn was appointed as the Lifestyles Editor a few years later.
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