Adoptive mom loses 2 boys to rare genetic disease

Published On: Dec 27 2012 02:18:01 AM EST
MIAMI, Fla. -

When Felicia Peete adopted four young siblings from foster care, she moved out of her Orlando area retirement community into a big new home where they could sing and roller-skate, far away from the memories of living in cars and homeless shelters. She imagined birthday and graduation celebrations with her four great nephews and niece, never dreaming that within two years she'd be planning funerals for her eight and nine-year old sons.
    
The children, all under the age of seven, had a tumultuous two years before 55-year-old Peete adopted them in 2010. They had stopped going to school, their father went to prison and their mother was struggling with drug abuse. They lacked basic hygiene and didn't know how to use toilet paper or brush their teeth. The training was arduous at times with four little ones, but "Mama Gail" as they called her, was good natured and she longed to make up for their past hurts.
    
But several months after the adoption, Peete worried something was wrong with then 7-year-old Tyler. The math whiz with a sophisticated vocabulary went from helping his siblings with their homework to getting D's and F's in school. Doctors treated him for hyperactivity disorder, but the symptoms progressed. Tyler began drooling and dragging his right leg.
    
After a series of lengthy genetic tests, Tyler was diagnosed with Adrenoleukodystrophy (ALD), a rare genetic disease that typically strikes young boys, leading to blindness, deafness and dementia and killing them within a few years.
    
And then the unthinkable happened. Tyjuan, then seven, and five-year-old Tyveon were diagnosed several months later. Their sister Tyanna was spared.
    
"I was just really scared. I wanted to just grab them and save them and take them away. I wanted to be God," said Peete.
    
Tyler's symptoms progressed quickly. Within four months he'd stopped walking, lost his sight and needed a feeding tube.
    
When Tyler struggled to walk, Tyjuan grabbed his hand and helped him along. When Tyler had a bathroom accident, Tyjuan bathed him.
    
Peete was honest with the children about Tyler's condition.
    
Tyjuan rubbed Tyler's forehead and straightened his blanket the day before he died in hospice care last January.
    
"You can't get used to that, you can't prepare yourself to that," said Peete, her voice breaking.
    
Then, little Tyveon was hospitalized for nearly four months after his brain started swelling. In the hospital bed next to his, his brother Tyjuan, was recovering from a stem cell treatment Peete hoped would save his life. The boys walked the hospital hallways together, dragging along their metal polls with medical tubes.
    
Peete spent two months in a North Carolina hospital where Tyjuan underwent three unsuccessful stem cell transplants.
    
No longer able to talk, the always affectionate Tyjuan often signed "I love you" and, blew kisses to comfort "Mama Gail". Peete helped him Skype with his two siblings back in Orlando and tried to stay positive.
    
"About a week before he died he looked at me and smiled and the tears rolled down his eyes like he knew what was going to happen and he knew I was going to be in pain. He just looked at me and I knew he was saying, 'I love you, Mama, I'm going to be OK,'."
    
The eight-year-old died in the hospital this past fall, away from his beloved siblings in a strange city. Peete waited to tell the other children in person that Tyjuan was in heaven with Tyler helping God watch over them.
    
As the family reeled from the boys' deaths, medical expenses were mounting. Tyveon was on a dozen medications a day. Peete barely had time to pay off Tyler's funeral and now she was planning Tyjuan's. She lost her sales job at a cable company and took a pay cut to work from home to as the boys' medical needs grew. This December, she moved the family into a smaller house along with her two grown daughters, who often watch the children.
    
Peete tried to comfort herself by watching videos of the boys singing and dancing, but she grew angry at God and stopped going to church. She blamed child welfare workers for not diagnosing the boys while in foster care and blamed herself for not being able to save them.
    
Tyanna has grown quiet and angry. Tyveon often plays a gospel song about heaven that reminds him of his brothers and asks to go to church.
    
But the community has rallied around them.
    
An anonymous donor stepped forward this month to pay off $1,700 of Tyjuan's outstanding funeral bill. The Department of Children and Families worked with organizations to buy them nearly $600 worth of Christmas presents.
    
"Through all of the heartache and loss of both boys, loss of her job, having to move into a smaller home, and getting treatment for Tyveon, Mrs. Peete has been kind and hopeful," said Salena Burden, an adoption caseworker.
    
Tyveon's treatments have been successful because he was diagnosed at a younger age than his brothers. As Peete watches, she said her raw emotions are healing.
    
Last Sunday, she went back to church for the first time since the boys' deaths.

Comments

The views expressed below are not those of News4Jax or its affiliated companies. By clicking on "Post," you acknowledge that you have read the Terms of Service and your comment is in compliance with such terms. Readers, please help keep this discussion respectful and on topic by flagging comments that are offensive or inappropriate (hover over the commenter's name and you'll see the flag option appear on right side of that line). And remember, respect goes both ways: Tolerance of others' opinions is important in a free discourse. If you're easily offended by strong opinions, you might skip reading comments entirely.

blog comments powered by Disqus