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Without support, our son wouldn’t be getting freed from his tics

I was overwhelmed by the well-wishes and show of support from fellow parents of kids with TS who wrote on my last blog. In addition, the insight from those before us who have navigated this winding road of psychiatric care and insurance bureaucracy is a great comfort because we need to be aware of the few laws that work in our favor.

Our son is exactly two months into his treatment now and, with the exception of a $750 lab bill, we are still wondering what our financial obligation will be.   We travel to see him every other weekend, rent a car to get  from the airport to the hospital and sleep at a hotel.   None of these costs of course, are covered by insurance, but they are necessary for our son’s treatment, his belief that we haven’t abandoned him and our own education.

The hospital sponsors a parent lecture series to make sure we’re educated on certain topics  before we bring him home.  

And this is the part that’s still seems so surreal.   Our son is coming home to us a well child.  If I followed this line by a trillion smiley face emoticons, it wouldn’t come close to conveying the joy and lightness we feel at this revelation.

He is virtually free of any visible tics or compulsions, and we wouldn’t believe it if we hadn’t seen it with our own two eyes.   He still struggles with a few vocal ritualizations, but these are currently the focus of his work with  his doctors and counselors, and he will be sleeping in the room down the hall from me within the next month.

And while we still have no idea what we owe the hospital that has given our son back his life, from where we stand right here and now,  it almost doesn’t matter.

 What matters to me now, though, is that better treatment is available to more kids right now, right where they are.

Many doctors say that the health of the human brain has been ignored, and this is inarguable when you consider the visibility of fundraisers for cancer research compared to those for neurological disorders such as TS, OCD, Alzheimer’s, etc.

Given the gift of a healthy son, whatever the bills may bring, I feel an overwhelming obligation to do what I can to help those already  committed to the awareness, education, treatment and cure for neurological disorders — in my case this will be for TS and it’s co-morbid disorders.

I’ll run the races I can to raise money and recruit others to do the same.  I’ll more closely follow the policy and push in my own state for inclusion of TS in bills for federal funding and call/write my representative — ironically, something I’ve never done, telling myself others would do it and feeling that taking care of my sick son left me no time/energy for anything else.

I’ll start with this, and it’s something you’ve read on these blogs and heard from NJCTS many times. But many of you have just ignored it. You need to go to POPVOX and show your support for federal TS legislation and write your representative. 
DO IT!

There’s also the NJ Walks For TS at Ramapo College on April 14. While we can’t be there, it’s a great way to raise awareness for kids with TS. Our son has done walks like this in the past in Mendham, and you wouldn’t believe how much fun it is and how many families show up. This is something you won’t want to miss!

And just this week, I saw on the NJCTS website an advertisement for a charitable dinner to benefit TS.
 
It seems this charitable organization, the MARG Foundation, has chosen to donate a large part of the funds they raise to NJCTS.  So, while all nonessential spending has ceased in our household pending receipt of our medical bills, this event is something we feel we owe to kids like our son.

Thank you again for your support, prayers and shared stories. And, if you are in the NJ area, please consider joining us at the MARG charitable dinner event on April 6.

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  1. This is wonderful to here. Can’t wait to here more about it when he actually comes home!

  2. I am so glad to hear that he is doing better. I spoke to Jeff recently and can not wait to see you guys again. I would also like to organize a fundraiser with the band and raise some money. Anything I can do to help you guys I would do. Looking forward into seeing you all soon.

  3. I am riveted by this story! Is there any way you can message me more info about the hospital that is treating your son with such success? My son’s tics have worsened over the past year, and no medications have worked for him–he now has one where he’s biting his tongue.

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