Thursday, May 10, 2012

The Jack Pot Fund

As Jack's second birthday approaches on May 28th, I would like to take a minute to remind you all about the fundraising program that our family created a year ago, in honor of Jack's first birthday.  As many of you know, The Jack Pot Fund 
was created to benefit our friends in need who are a part of our local Down syndrome community.  The money raised is used to help local families of children with Down Syndrome pay for expensive therapies, medications, or medical supplies that they struggle to afford on their own.  

No child should go without what he or she needs to prosper.
What some of you may not know about The Jack Pot Fund is that I started the program in response to recent budget cuts that greatly affected many North Carolina families in 2011.  Prior to July 1, 2011 all exceptional children (with special needs or born prematurely) under the age of three were offered and received necessary early intervention assistance from the state via the Children's Developmental Services Agency, which is part of the NC Department of Health and Human Services.  Well, due to the economic crisis that hit us all in the past couple of years, the state cut budgets in many areas, including the free services that our Jack received, which at that time included occupational and speech therapies.  (Jack did and still does receive physical therapy privately.)

After this change, families went from not having to pay a dime for their childrens' therapies to being responsible for a portion or all of the total cost out of their own pockets after insurance (and many insurance companies don't cover all therapies or the service lines are "out of network" like ours).  The new payment plan for early intervention services is now tiered based on total gross family income, with families having to pay between 20% and 100% of the cost of therapies.  (And, for those of you who are not familiar with or who have never received therapy, an hour of occupational therapy can cost up to $125!)  So, needless to say, this change put a lot of families in a very difficult position.  Many families (including my own) had to make the heartbreaking decision to cut back on some therapies or at least cut back on the frequency of services.  Some even had to go as far as choosing no therapy at all due to the burden of the extra cost.  And, our children need these therapies.  It was this realization that shocked me, that saddened me, that rocked me to the core ... and that made me start The Jack Pot Fund.

After making some adjustments to Jack's therapies following this change, we have managed to figure out a system that has worked beautifully for our Jack.  Don't get me wrong ... it's definitely expensive, and we've had to make some sacrifices we didn't really want to make.  But, Jack is growing and developing in all areas, and every day we count our many blessings for what we have, and we try to not take anything for granted.   

Jack has all any little boy could ever want … he has tons of books and toys, wonderful and dedicated therapists,
and the medicines he needs to stay healthy. 

But not all of his friends do

So again this year, in honor of Jack's birthday, we ask that you consider a donation to The Jack Pot Fund to help children with Down syndrome get the help they need and deserve.  To donate online via PayPal, please visit the above link and scroll to the bottom of the screen for instructions.  If you would prefer to donate via mail, please contact me at for more information.

Monetary awards from The Jact Pot Fund are appropriated to families after full review by the DSNGG board, based on intended use and financial need.  I would like to report that our first "gift" from The Jack Pot Fund was recently presented voluntarily by the DSNGG board to a family of a child who was facing a sudden life-threatening diagnosis.  We hope that our gift helped lighten the financial load of unexpected medical expenses for them.  (And, I am ecstatic to also report that this child is currently healthy and doing well!)

All of our love and many thanks to you!

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