December 10, 2010…The Department of Children and Families gave me custody of 4 siblings ages 3,4,5, and 7.
I adopted them all in Mar 2011. It was a beautiful day when the judge signed the adoption papers and we became a big happy family. I already had raised 4 biological children of my own and the baby girl was 22 yrs of age. The children were adapting very well…going to school, which was something that they were not familiar with…they were making friends and enjoying roller skating and riding their bikes and playing with each other.
Loud laughter, and smiles going all around. then one day Tyler began to have trouble walking and repeatedly falling. I thought he was being clumsy but it progressed and eventually I had to begin holding his hand to help him walk. I took him to the doctor several days after the adoption became final, I was authorized for any medical procedure at that time…the test results took several months…MRI’s..blood test and cat scans…6 moths went by and still no prognosis…finally I remember that they had a uncle with similar symptoms and I related the message to the Neurologist.
She did a test called “Very long chain fatty acid test” and revealed that the boys were infected with the fatal blood disorder, called X-Linked Adrenoleukodystrophy. By the time the results came back it was too late for Tyler. approximately 10 months later in October he had to under go surgery to input a G-tube so he could eat. By the end of December 2011 he was in hospice care and passed away on 1/4/2012.
Tyjuan symptoms followed shortly after the death of Tyler and he underwent several stem cell transplants which didn’t take. He was transferred to Duke Medical Center in North Carolina, where both Tyjuan and myself resided for several months before undergoing several test and trials but none were sufficient. He passed in 08/2012…this disease is so fatal,,the best time to get tested is when the child is around 3 or 4 years old…this is the time when Tyler and Tyjuan was placed in a children’s home…and were not given the necessary test to reveal the fatal blood disorder..according to the paperwork they only had a genetic mental disorder, the disease can be confused with ADHD symptoms and can be misdiagnosed.
If there is anyone that has any former relatives that display symptoms of drooling,, slow speech, problems walking, of holding the arms close to the body or the fingers held in a way that does not look normal please get the child tested…it has been so difficult this passed year and a half..not being able to work and bills are steady getting higher with collection agencies calling constantly…I get through this by trusting in the Lord, I know he will not be on me no more than I can bear…and believing that the children were property of God’s and were only on loan to me..gives me peace and I did enjoy the little time with them that I had. Tyveon is a survivor his transplant worked and he was caught at the right time..he is doing well.
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