Prader Willi in the news: Mom Fights For Sons Life

 

Children with Prader-Willi Syndrome are considered a higher risk for respiratory infections.  This story came in through my RSS today, we are also with Anthem Blue Cross and were similarly rejected for the Synegis vaccine because Hope has, thus far, been very healthy.  Our pediatrician was very concerned and filed appeals, we worked with our case manager– also to no avail.  Knowing we weren’t going to be able to get the vaccine, and knowing through our pediatrician that the RSV season had officially begun, with cases being reported at Children’s Hospital, was one of the motivating reasons to pull Grace from daycare.

From KKTV 11 News in Colorado:

A seven-month-old La Junta baby could get sick and die at any moment if he doesn’t get the shots he needs and the family’s insurance company is refusing to pay.

Crystal Redner,seven-month-old Trevin Matthew’s mom, says it has been an uphill battle with her insurance company, Anthem Insurance, who refuses to pay for the potential life saving treatment.

Trevin Matthew Redner was born with what’s called Prader-Willi Syndrome. It’s developed at conception. The syndrome is similar to Down Syndrome in that it effects your chromosomes, but with Prader-Willi you have weak muscle tone and the constant sense of hunger. “They’ll do anything to get food because they never feel full and they have a constant sensation to eat,” said Crystal Redner.

However, during the first year for a child who has Prader-Willi, they don’t feel hungry at all, it’s often difficult to get babies with that syndrome to eat. It’s sometime after one year that those with the syndrome don’t know when to stop eating and constantly feel hungry. Those with Prader-Willi are also often sleepy and very weak.

‘Still hungry for a cure,’ is the slogan for children who suffer from Prader-Willi Syndrome.

At only seven-months-old Trevin has already spent half his life in hospitals and is in therapy four times a week. “Physical therapy, occupational therapy, speech therapy. We do a lot of early intervention just to keep him going,” said Redner. Trevin also has Scoliosis, which is the curvature of the spine, because Trevin is not strong enough to hold himself up.

Crystal Redner gives her son growth hormone shots six nights a week. It’s mandatory for Prader-Willi babies, but Synegis shots are not. “We’ve been fighting that since October and we’ve been denied,” said Redner.

Synegis shots prevent RSV, or Respiratory Syncytial Virus, which is a respiratory virus that could be deadly especially for babies like Trevin who already have weak systems and are not strong enough to fight the virus off themselves. “We want the insurance to honor what doctors that see him on a daily basis say, not their doctor who has never seen him,” said Redner. She says the doctors who work for Anthem Insurance are the ones who won’t allow Trevin to get the Synegis shots, yet Trevin’s doctors say that he needs them. Trevin’s doctors have been recommending that he be given one shot every month from October to March for the first two years of his life.

“Just the fact that it could take his life and we were lucky when we got to Children’s Hospital when we did,” said Redner. Trevin has had RSV once already and almost died. Crystal Redner says it feels as though her insurance company is gambling with her son’s life by not covering shots that could save his life. The shots are a series of six shots that cost upward of $10,000.

“So, we just do the best we can, don’t take him out much, don’t take him to Wal-Mart, keep him in and sanitize a lot,” said Redner.

The Redner’s doctors have been sending letter of appeal after letter of appeal to Anthem Insurance, but their fear now is that Trevin’s life saving treatment will be granted too late.

11 News made several calls to Anthem Insurance on Saturday. None were returned, but we will be following the story and will hopefully be able to get some answers during business hours.

…should be an interesting story to follow.

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One Response to Prader Willi in the news: Mom Fights For Sons Life

  1. Pingback: Pins and needles « Holding on to Hope…and Chasing Grace

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