Mamatoga Loves: Jake's Help from Heaven

This week on Thursday, July 26th at Vapor Nightclub is a great fundraising event that you won't want to miss. Tickets are just $50 per person and include delicious buffets, fantastic desserts and a chance to play the most unique game of the summer! Saratoga’s Finest Fillies (Julie Johnson, Heather Straughter, Johanna Friedman, Susan Halstead, Kelly Hite, Amy Raimo, Elaine Sillery, Christianne Smith and Melissa Zieker) will be competing to get to the finish line first as they take over the dance floor and make it VAPOR RACE COURSE! Guests will be able to place $10 bets on the filly of their choice (or you can increase their odds of winning and bet on more than one filly)! For every $10 bet that is placed, guests will also get a raffle ticket to be placed in the box representing the filly of their choice. Prizes will be drawn for Win, Place and Show finishes!

I got a chance to chat with one of these Fine Fillies, Heather Straughter, about the organization the fundraiser is going to benefit, Jake's Help from Heaven. The Jake's Help From Heaven Foundation, founded in 2011, is a non-profit foundation dedicated to supporting individuals with multiple medical challenges and disabilities. Countless challenges occur in caring for medically fragile, special needs individuals. Their goal is to assist individuals affected by debilitating illnesses. Brian, Heather and Ethan Straughter are the core members behind the Jake’s Help From Heaven foundation. The foundation is named after their son and Ethan's brother, Jake Straughter, who passed away in December of 2010. Here is a little bit about their inspiring story.

Heather: Brian and I met in Boston and were married in 2004. We had both of our boys while living in Boston and moved to Saratoga Springs in 2006 when Jake was 2 months old. Ironically, we wanted to hold off moving until we knew he was born healthy. And healthy he was at birth - he was 8 lbs, 3 ounces and perfect from the beginning. We immediately loved living in Saratoga Springs and thought it was such a perfect place to raise a family. When Jake first became ill he was 8 months old. Prior to that he was incredibly healthy and very typically developing. Once he had his first seizure and we spent 117 days in the hospital, life completely changed. When we were finally discharged from Boston Children's Hospital and able to return back to Saratoga Springs, life as we knew it was over. We entered the world of early intervention, insurance and case workers. And both Brian and I realized quickly that if we didn't advocate for Jake no one else would. We learned that we needed to push as hard as we could for therapies, education, medical approvals and pretty much everything. Before I had children, I was a special ed teacher in Boston and Brian was a principal at an inclusion school. We totally relied on these skills to fight for Jake and quickly learned that no one else knew our son and could advocate for our son in quite the same way we could.

Jake's first seizure happened at 3am and was completely out of the blue. When we put him down to bed that night (or in the 8 months prior) there was no indication at all that something was going to change. Although the extremeness of Jake's illness was rare, we have learned that so often these things do come out of the blue.

While Jake had been ill since he was 8 months old, his death came completely unexpectedly to all of us. It was another instance where we learned the very difficult lesson that you just don't know what might happen and it is important to really embrace life and make the most of it at all times. After he died, Brian and I really knew we had to somehow find a way to be a resource and share everything that we had learned through Jake - both as parents and as medical advocates. We learned about fighting with insurance companies for medications and some non-traditional surgeries and about traveling for doctor visits and basically trying to do everything to improve Jake's quality of life. We wanted to figure out how to share all this knowledge we had. The idea for the foundation was pretty much immediate following Jake's death.

We met with an attorney within a month after his death and began the process of establishing as a 501c3. We became an official non-profit on March 17, 2011 and began meeting as a Board of Directors. Our Board of Directors are Brian and myself, Jeff Ames, Marc Brynczka, Colleen Carlson, Julie Johnson, Rachel Mitchell and Natalie Sillery.

The foundation has been an incredible support for us as a family. Not only does it feel good to be able to help and support other families in ways that we know first hand make a difference but it has also impacted us in ways that we never anticipated. To meet other families and individuals that are still fighting the same fight we fought with Jake is really very profound for us. It is so personal and makes us feel so proud of everything we learned during Jake's short stay with us. We continue to be amazed by how many families and individuals have medically complicated situations - while we have predominately helped children, we don't want to be seen as just a support to kids. Jake's issues were significant enough that we anticipated that he would always live with us and would always require therapies and support.

We have been incredibly touched by the support we have received since Jake's passing and since we started Jake's Help From Heaven. When we were working on establishing the foundation, we knew we needed to have a fundraiser. We decided to hold our first event (and subsequent events) around his birthday (5/4). We also chose to hold a family event at Saratoga Strike Zone. While Jake was unable to walk or talk, we had often gone to the bowling alley as a family. He enjoyed watching us from his wheelchair and it was something we had always been able to do as a family. Our first event was held on May 1st, 2011 and we had an initial goal of raising $10,000. We were blown away by the support from the community and the event sold out weeks before the event and we raised $32,000. This year we held the 2nd Annual Family Fundraiser which was held on May 6, 2012 and we raised over $51,000!

We have been lucky to have received such support. Since our inception we have funded $32,000 worth of applications and with each meeting the amount of grants requested and the amount asked for has been increased.

A sampling of recent purchases made possible by our fundraising efforts include:

  • An adaptive outdoor swing for a 10 year old girl in Berne. She has a severe neurological disorder, seizures and is non-mobile and non-verbal. The swing allows her to be outside with her two sibling and be safe. It also has therapeutic benefits.
  • A complete Tumble Forms seating system for a 5-year-old boy in Waterford. He suffered a severe sepsis infection when he was 4 that led to neurological devastation, limb amputations, stroke and other medical complications. This system allows him to be properly positioned and have a safe place to sit, eat and play.
  • A Stamina Magnetic exercise bike for an 11-year-old in Schenectady who suffers from seizures, cerebral palsy, autism and severe headaches. He has limited mobility and the ability to exercise safely at home will help him with strength and balance.
  • Hippo-therapy sessions for a 2-year-old girl from Watervliet. She suffers from Alternating Hemiplegia, a rare disorder that causes transient episodes of paralysis. Hippo-therapy is helping her gain mobility, strength and endurance.
  • An Emfit Movement Monitor for a 3-year-old boy in Germantown. He suffers from night-time tonic-clonic seizures that need medication to be stopped. This monitor would alert his family at the onset of a seizure.
  • Tumble Forms Pediatric Positioning system for a 17-month-old boy in Latham. He is suffering from hyperbilirubinemia, respiratory complications, decreased muscle tone and Chiari I Malformation. This system will be used daily to develop trunk strength, for safety while eating and to help regain lost skills.

The foundation has also been important for our other son, Ethan, who is now 7 years old. Jake and Ethan were 15 months apart and Jake was such a huge part of our everyday life - so much of our life revolved around his routines and we all feel the loss so deeply. For Ethan, when he comes on deliveries with us, it helps him remember his time with Jake and feel connected to other kids.

Thank you to Heather for sharing her story, and if you would like to come out and support Jake's Help from Heaven head over to Vapor this Thursday for Saratoga's Finest Fillies! Click here for more information and to buy tickets and watch the great video from Modern Mix Marketing featuring Heather giving you even more info about this great event! I'll be there to bet on the Fillies, I hope to see you there too!

http://www.youtube.com/watch?v=BjpJkhWrjb0&feature=youtu.be