Baby Lamech’s rare disease
MIDRAND – "It has affected our marriage, our lives and families. Our whole life is [at a] standstill," said baby Lamech's mother, Mary-Anne James.
Mary-Anne and her husband Owen James thought that when they welcomed their son into the world 10 months ago, he would live a long and happy life.
But at three months old, they received some devastating news.
“My beautiful baby boy Lamech Jerumeel James was diagnosed with a rare life-threatening disease called biliary atresia at three months,” said mom Mary-Anne.
“It is a disease of the liver, where one or more bile ducts are narrow, blocked or absent.”
As soon as he was diagnosed, baby Lamech underwent the Kasai operation to remove damaged bile ducts. In Lamech’s case, the operation failed because his liver was already damaged. The doctor has given him two years unless he undergoes an emergency liver transplant.
Mary-Anne said that on a daily basis, there are emotional and financial challenges when raising a special needs baby.
“[Hearing] him crying in pain can make you lose your mind and he is in discomfort most of the time. Lamech is tube-fed so we constantly have to watch him while he feeds so that he does not choke or vomit.
“It has affected our marriage, our lives and families. Our whole life is [at a] standstill. Financially it’s draining as everything costs money – his milk, syringes, feeding tubes, diapers and medication.”
Through all the pain and endless sacrifices, the parents of baby Lamech still have hopes and dreams for their one and only child.
“My baby boy is the sweetest little fighter. He has had major surgery at three months and has been in and out of hospital. But through all the pain and discomfort he smiles a beautiful smile, laughs and plays as a baby does.”
According to Mary-Anne, the doctors have advised that baby Lamech undergo a liver transplant before the age of two or it might be too late. Currently, there is no cure for the disease.
Owen and Mary-Anne have opened a Facebook account, which has more than 200 followers, aiming to raise awareness about the liver disease and also raise funds for all the medical needs of baby Lamech.
“Through the Facebook page, we have received financial and emotional support. We really need financial support for our baby’s medication.
“Although we have lifelong hospitals, tests and surgeries, our hopes and dreams are for our son to get the [liver] transplant and for him to be healthy.”
If you would like to help the James family please contact Mary-Anne Owen on 081 274 1552.
You can also visit their backabuddy web page here, as well as their Facebook page.
