Keane's wish

He is of course looking forward to Christmas. But getting all his wishes to come true is going to be a little more complicated than writing a list and checking it twice. Keane, not yet two, is stricken with "an undiagnosed Leukodystrophy," a rare and devastating illness that results from a lack of white brain matter.

He is a kid in serious medical trouble, though one lucky enough to have a loving family, and caring community (the Ancient Order of Hibernians recently organized a fundraiser in Trenton).

But if only love was enough to inspire the family's health insurance company, and the State of New Jersey, which the O'Brian family calls home.

"My wife just informed me of a very discouraging call she received from an insurance representative assigned to help us. The associate basically provided excuses," Sean O'Brien, Keane's dad, said when recently contacted for this story.

Keane's problems are complex and multiple. He has torticollis (weak neck) and, as a result, always lay on the same side of his head.

"This was causing his head to form abnormally and would lead to skull and brain problems. The insurance would not cover the preventative option, a helmet," Sean said.

"But insurance would cover skull or brain surgery. Our insurance considers this (the helmet) cosmetic and questions if it works. If a specialist with years of education recommends it, I tend to agree and it did work for Keane. It cost us roughly $10,000 for two helmets. This does not count towards our out of pocket contribution," he said.

Keane requires multiple MRIs each year. "A side by side comparison must be done to see if he is losing white brain matter. Our insurance considers anything more than one MRI a year to be experimental. They are roughly $5,000 each, and do not count towards our out of pocket contribution.

"Our plan has a max out of pocket per year that you would imagine we hit with no problem. Well, wrong. Our insurance company does not count anything they deny as an out of pocket contribution. Their explanation is we don't cover that, so it doesn't count. They have it all figured out. It is a business, not insurance," said Sean.

While most families think in terms of turkey and all the trimmings, Keane's Christmas dinner will be his usual fare: formula. His parents say they spend $1500 a month just for special formula.

"Our insurance will not cover any of this because they say if Keane was normal we would have to buy him food," said Sean O'Brien.

"Way too much of our time is spent fighting with our insurance and the state instead of caring for our son. Keane just received a walker and is getting braces for his legs and feet. We are trying to get him to walk. We were at Children's Hospital discussing inserting a feeding tube into Keane's stomach. We are trying to get him to eat," Sean said.

And that, in essence, is the family's biggest Christmas wish.

Next week: How readers can help Keane and his family.

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