Target:
Everyone
Region:
United States of America
Website:
www.lissencephaly.org

Erin Markes, 19, was arrested, jailed and charged with felony child neglect. Her 4-year-old son reportedly only weighed 10 pounds.

At first glance, this is a horrifying case of neglect. How could any mother not feed her child? Only when you delve deeper into the story will you find the truth. Erin is no criminal, no monster – but a victim of tragic circumstance.

Erin’s son was born with a severe and terminal birth defect of the brain called lissencephaly. (smooth brain) He suffers from seizures, chronic respiratory problems and severe feeding intolerance. He cannot walk, talk, sit, or play like your average baby. Most children like him die before their second birthday. The average age is 5. There is no cure, nor the hope of a cure in the future.

Feeding problems in a child with severe disabilities are unpredictable and uncontrollable. Most times a feeding tube is your first option. But a feeding tube is not a “magic pill” for all feeding problems. In fact, it can open the door to more. Reflux is a condition where the food basically bounces back and forth from the stomach to the esophagus. Hampering absorption of nutrients and medications. In delayed stomach emptying food basically sits there, undigested and unable to properly pass to the small intestine where all foods are absorbed. Most children with lissencephaly have these problems and do fare well once a J-tube is inserted. (Fed directly into the intestine) Erin’s son was not yet given this option. Few doctors are versed with extreme feeding intolerance making the diagnosis and treatment a lengthy process.

What causes these problems? In children like Erin’s son, the brain simply is not strong enough to keep all of his systems in proper working order. This is out of mom’s control. If he is having a bad seizure day, these problems are magnified. For most children like him, their problems are like a dog chasing his tail. If they are having a particularly bad feeding day, their medicines are either being thrown up or not absorbed and their seizures are increased. If they are having numerous seizures their brain is too weak to keep all systems running properly.

The news accounts will tell you that Erin Markes did not feed her child and no medicines were detected in his system. They will also post a CDC growth chart for children. But what they didn’t tell you is that he has suffered feeding intolerance since birth. That his drug levels were “low”. (Due to absorption issues.) They also did not explain that the CDC “standard” growth chart does not even apply to a child with his condition. Children with severe developmental delay typically fall below or off the chart due to their chronic health problems. To put it in perspective, Erin’s son is not much longer than a 9-10 month-old-child. The news will tell you Erin’s son had bedsores. What they don’t tell you is bedsores are pretty unavoidable when you are severely underweight. You can get them from laying in bed, sitting in a chair or being rubbed by an attachment on a wheelchair.

Caring for a child with lissencephaly is a 24-hour-a day job. Most families have the luxury of an RN helping them. Erin did all of this on her own. She is a single – extremely young mother who, at the age of 15, was handed a severely sick, dying child with nothing but a pat on the back and a wish to do well. The simple fact that she was able to keep a 10 pound, 4-year-old child with lissencephaly alive speaks volumes to her care. Parents of other children with this disorder applaud and admire her valiant efforts. She did her best. Don’t jump to conclusions by reports that Erin herself states, “I could have done more.” What parent doesn’t wish they could do more? When you are faced with a dying child, certainly you think you could do more. Erin did all she could.


Dear Governor Charlie Crist:

Erin’s son was dealt one of the cruelest hands in life. Now, DCF in Florida takes his mother away. The only joy this boy has known. Sadly, these are probably the last few days of this little guy’s life – doesn’t he deserve to spend them wrapped in his mother’s arms.

We, the undersigned, want you to exonerate Erin of all charges and send her son home. Let this little boy be surrounded by the family that loves him and cares for him. No one can ever predict how long a child with lissencephaly can live. The human spirit is an amazing thing. Keeping this little boy away from his mother extinguishes a little of that spark. He deserves more. As a society we owe it to him. We cannot punish him or his mother for circumstance out of their control.

Stop the madness. Drop the charges against Erin and send her son home.

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