Why we put our money where our heart is...

JayEtta and Dan Hecker recently donated $10,000 to Elliott’s Race for Every Child team in addition to the other major contributions to launch the campaign.

As Gabi’s parents and Elliott’s grandparents, we have been devastated by the challenges that have impacted Elliott’s life. Retirement takes faith that you have enough money to be secure and comfortable and not be a burden on your children. With our savings and federal retirement annuities, we were pretty confident that we would not only be secure but have sufficient funds to support travels, hobbies, family vacations, our own long term care, plus enough to help with grandchildren’s college.

In fact when Elliott was born, we pressured Gabi to get Elliott a social security number so we could begin the first installment of a college savings fund. However, it has become increasingly apparent that Elliott has profound and likely permanent disabilities, and will never attend college.

His long term financial needs are astronomical, certainly much greater than they would be for college tuition. We have reassessed our finances to help relieve Gabi and John’s significant and stressful financial needs. However, we have two other daughters and there will likely and hopefully be other grandchildren.

With no need for a college fund, we explored other ways we could invest in Elliott’s future. We focused on the fact that there are significant limitations on how much Elliott’s doctors can help him in the absence of a diagnosis. We have been lucky enough to have Dr. Adeline Vanderver on Elliott’s medical team at Children’s Hospital. She is a pediatric neuro-geneticist and global leader in research on the genetic foundation for diagnosing and treating complex, but poorly understood neurologic disorders, like Elliott’s. Sadly, we learned that funding has been a major constraint on her research—and that Federal funding on these issues is woefully inadequate. That’s when we decided to form “Wishes for Elliott,” to bring attention to this vital research and to raise urgently needed funds to push the envelope on research and support Dr. Vanderver’s work.

As a matter of devotion to this cause, we had to put our money where our mouth is – or in this case, where our heart is. So we recently made a $10,000 donation to the Wishes for Elliott race team and have additionally made a commitment to fund 20% of each priority project of Wishes for Elliott – up to $25,000 this year. As an organization, we have set a goal to raise $100,000 by June 2015 – and $300,000 over the next three years. As we ask others to donate, we have ourselves committed to investing in Elliott’s future, and the future of thousands of other children afflicted with undiagnosed neurological disorders.

With this contribution, there is less money to help Gabi and John buy the wheelchair accessible van they need, buy and adapt a new wheelchair accessible home, support numerous uncovered consultations, or underwrite other of Elliott’s extraordinary needs. With John having set aside his teaching career to care full time for Elliott, there are many expenses beyond their budget.

If you share our devastation that federal agencies fail to support this ground breaking research so important to Elliott and thousands of other children, please contribute to the Wishes for Elliott Research Fund at the highest level you can. You may even consider making this a component of your annual giving plan. There is a real promise -- potentially for Elliott, but certainly for thousands of children who are left with no answers -- and no treatment.

Please help us make ELLIOTT’S WISHES COME TRUE.