After trying to get pregnant for 16 years, Shannon, and Robert Contreras decided to adopt a baby of a friend who was pregnant but not be able to keep the child.
When the Houston-area couple brought home their son, Robert, Jr.— nicknamed “Readme”— they noticed that a number of strange characters. The doctor suspected colic, but sent the family to a neurologist, who discovered Henkie was going on 20 minutes of seizures. On the day that the adoption was completed, they were told their boy diagnosis: intractable epilepsy and ataxic cerebral palsy.
According to the Foundation for Epilepsy, intractable epilepsy is defined by seizures that persist after at least two medication trials. Seizures do not respond to seizure medication and seriously interfere with quality of life.
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Henkie, now 5, takes seven medications, has seizures nearly every day and is not able to sit, stand or walk on his own.
“But he has a great personality,” Shannon told Fox News’ Jon Scott.
Robert quit his job as an electrician and Shannon was let go from her job in the oil industry. She has recently found a job in the health care system.
“We are taking this financial hit, but it is, of course, our biggest concern was our son. The epilepsy started getting worse and worse,” Robert said.
Bubby was having 25 to 30 seizures a day and operates on about the level of a 6-month-old baby, his parents said. The couple takes turns sleeping in shifts to check Henkie for the signs of seizure.
Now, supporters have started a GoFundMe page to cover the costs of Henkie’s medical supplies that are not covered by Supplemental Security Income (SSI) and Medicaid. They have raised more than $200,000 of their $250,000 goal.
“We don’t want anybody to us, but that we are in this situation where we must do what we need to do for our son, and we will,” Robert said.
The family is staying positive amongst the challenges, though.
“We have a good life,” Shannon said. “It’s not all doom and gloom.”
“Don’t pity us, because he enjoys life in his own way,” Robert said. “We love to share.”