MANSFIELD -- Morgan Cook couldn’t believe it. The 13-year-old gazed in wonder at the she shed, decked out with chic gray couch, a furry white chair and a hot pink vanity.
“This is mine?”
Morgan continued to look around, taking in every detail, as an excited group of family and friends took in the excitement. The new she shed was customized perfectly for the little girl with a big heart and a love for all things girly -- from the spray of pink butterflies on the wall to the hand-painted vanity filled with bags of makeup, nail polish and styling tools.
“The she shed is just absolutely amazing. It’s Morgan to a T,” said Morgan’s father, Chad Cook. “Her reaction when we pulled in and she saw it for the first time was probably the biggest thing for me. To see the grin on her face -- I can’t thank the Visual Bucket List enough.”
Morgan received her she shed from the Visual Bucket List Foundation, a non-profit that helps children who are or who will be faced with severe visual impairment or total loss of vision experience lasting visual memories.
“There is nothing more rewarding than seeing pure joy and excitement in a child’s face. That is what we were able to see Friday night with Morgan when she received the keys to her she shed,” said Steve and Christine Myers, co-founders of the Visual Bucket List Foundation.
In the past, the Visual Bucket List has arranged special experiences and trips for children to enjoy while they still have their sight. Opportunities for travel are limited due to COVID-19, so the organization and Morgan’s parents came up with the idea to give Morgan a private haven to express her creativity.
“She’s a girly girl,” said Cook. “She loves to dance. She loves music. She’s very artistic and creative which I think is why she likes the hair and the makeup.”
The day after her once-in-a-lifetime surprise, Morgan and her mother were up and in the she shed at 6 a.m.
“We’ve already painted our nails twice,” Catherine said.
Morgan was born with a cleft lip and palate as well as agenesis of the corpus callosum, a rare congenital birth defect in which the portion of the brain that connects the left and right hemispheres is partially or completely missing. She underwent her first surgery at just three months old.
“When Morgan was little, they used to tell us that she would never walk by herself, that she’d always have to have a walker or an aide. She proved them wrong. This girl can dance and has rhythm. We’ve worked really hard with her, teaching her and encouraging her. We don’t treat her any different than anybody else,” Catherine said. “She helps with laundry, she’s been learning how to use the washer and dryer and fold clothes. ... She’s learning to cook. She absolutely loves to bake. She loves to decorate cakes and cookies.”
Morgan was also born with various eye conditions, including bilateral coloboma (occurs when parts of the eye tissue don’t form) bilateral nystagmus (involuntary repetitive and uncontrolled movements of the eye) and nerve damage. Nevertheless, her vision remained steady until last year.
“What’s going on with her eyes right now was not on our radar at all,” Catherine said. “Although she had poor vision, her eyes were stable.”
Two days before her twelfth birthday, Morgan began to complain that it was dark outside -- even when the sun was high in the sky. Doctors told the Cooks that Morgan’s left retina had detached overnight, causing complete vision loss in her left eye. Morgan had her first retinal surgery just two weeks later. By February, her left eye had healed and her vision was stable, but a routine check revealed that her right retina had started to detach.
“I was devastated, but maintained my composure for Morgan. I was crushed that she would again have to shortly undergo the long surgery and healing process,” her mother told the Visual Bucket List foundation.
Between March and June of this year, Morgan had five surgeries to try and save her vision. Although her vision is stable now, she experienced significant vision loss over the last year. She is continuing to work with vision and mobility specialists. She and her mother have started learning braille.
“Her body’s fighting to be blind and we’re fighting to try to save it. Just trying to embrace the vision that she has and try to make memories,” Catherine said.
Despite the challenges of the past year, Morgan stays positive and doesn’t complain.
“Morgan has kept her spirits up and has proved to be an excellent patient. Prior to her last surgery, she squatted down to comfort a toddler who was having tubes in his ears and explained to him how it works,” her parents wrote on her GoFundMe page. “Morgan is always one to reach out and comfort someone in need. She will not let her doctors proceed without acknowledging a new person in the room so everyone feels welcome.”
Watching Morgan explore her she shed, Catherine felt that compassion come full circle.
“For her to feel that love and warmth that she gives so much freely to everybody else, and know that people really do care about her, it was priceless,” said Morgan’s mother, Catherine Cook. “That’s what’s so neat about it is all the love that went into it.”
The Visual Bucket List has continued to provide visual memories and help to children during the pandemic, but the non-profit has had to cancel its last three fundraisers due to COVID-19 restrictions. Donations can be made online at www.thevisualbucketlistfoundation.com.