The Willis family knows they can’t save their baby, who may only have months to live, but they’re hoping their story will help save the lives of others.
TJ Willis was born with an extremely rare and fatal disease known as Menkes Syndrome, a disease in which the body’s intestines are unable to absorb copper, depriving the brain and other tissues of the essential mineral.
“I sat in a room and somebody told me my son was probably going to die,” said Darcy Willis, TJ’s mother.
The disease has no cure, but some treatments have proven to have positive results if given early enough.
According to the Menkes Foundation, copper injections have been used as a form of treatment, with mixed results. The foundation says the earlier the treatment is given, the more positive the results are.
For TJ, however, there are few options as too much time has passed. He likely won’t see his first birthday, his family says.
Willis said her son was in the neonatal intensive care unit for nearly two weeks after his birth, but doctors couldn’t diagnose him.
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“TJ was in the NICU for two weeks and no one knew about Menkes and they were looking at all his symtpoms,” Willis said. “He had this unusual hair and every time in the NICU I would get there, they would be looking at his hair and looking at his hair and no one knew why it was so unusual.”
Menkes, also known as Menkes Kinky Hair Disease, often causes hypothermia and “kinky” hair.
By the time the family managed to get an answer on their son’s health, doctors said it was likely too late.
So his family is making him as comfortable as possible, through hospice care and time with his big sister.
Surrounded by love and support, faith has flooded the family as they face an unimaginable reality.
“TJ doesn’t look sick, he doesn’t look like he’s struggling or anything, but he’s probably having a seizure as we speak,” said his grandmother, Judy Cobb. “When you’re holding him, it’s like God is with you.”
Willis said she’s hoping her son’s story will raise awareness about the disease, in hopes that others may be diagnosed sooner.
“I knew that I had a choice and I could either bring us all down with my sadness and my sorrow or I could try to pull us through this,” she said.
When she’s not with her son, Willis spends her days blogging about her family’s journey and connecting with other families battling the disease.
“If you ever have to walk in my shoes, educate yourself,” she wrote. “Learn everything there is to know. Ask lots of questions.”
To make a donation to the Willis family click here.
