Congresswoman

http://www.laeliasky.com/2011/01/14/karma/

The link above explains better what battles we’re fighting.

My name is Alexis ######, and my cell phone number is ###-###-####. My  aunt didn’t realize we had to disconnect our home phone number she  gave you.

I wasn’t sure about contacting my congresswoman so soon, but we are  fighting battles and my aunt is just feeling for us. My daughter,  Laelia, has a super rare condition called arthrogryposis. It only  affects 1 in 3,000 births, but it does occur in the populous enough  that I think we should be aware of it and what children who have it  immediately need: namely physical therapy. Arthrogryposis literally  means “joint contractures” which are the worst they’ll ever be at  birth. They need to be stretched and they need to start weight bearing  and sometimes serial casting right away.

When my daughter was born we had the same troubles (mentioned in the  link above) that we are having now. No one can get us physical or  occupational therapy in a timely manner. So why aren’t we more  patient? Well the problem is that timely physical therapy done  frequently can mean the different in these kids (depending on the  severity of the contractures) between walking and not walking, having  future surgeries or avoiding future surgeries, needing lifelong care  or being independent.

In America where technology and advances are so great, and information  and education so available, I don’t see why kids with arthrogryposis  have to fight tooth and nail to get basic treatment. Physical therapy  is the #1 treatment for this incurable condition. Sometimes the only  treatment; surgery should always be the last resort.

There were some exercises that we didn’t know to do with our daughter,  that if we had done (like weight bearing on her knees, something you  learn in physical therapy) might have meant she’d be taking her first  steps now. But we couldn’t get a PT appointment for three weeks after  she was born. Then that was only an evaluation while we waited  endlessly for insurance and doctors appointments and  prescriptions–all for the only treatment for this condition. It  should be a no-brainer! It should be automatic!

Our insurance got so expensive that it is now $40 (copay out of our  pockets) for one half an hour PT visit. Needing two visits a week is  not affordable. There is CCS (California Children’s Services) that can  provide PT, but it takes a long time. Waiting is not ideal for these  kids. We’re waiting now.

Once a doctor diagnoses arthrogryposis, that should be all you need to  get TIMELY physical and occupational therapy IMMEDIATELY. The next  available appointment with the nearest available physical therapist  should be granted. No exceptions.

I don’t really know what you can do for us, but if there’s any way you  can keep the next mom who has a child with arthrogryposis from waiting  weeks on end to get their child the only treatment the condition  requires, then you’ll have one more functional person in the world.

Or if there’s ANY way you can get ANY professional within 50 miles to  give us needed physical therapy immediately, we’ll take it!

One Response to “Congresswoman”

  1. Laura says:

    ~HUGS!!!~
    ~spa day!!!~
    ~holds phone while you go pee~
    ~MORE HUGS!!~

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