Hall-Leo_Ween 2013

Fans of Leo, It’s October, which is a favorite time of year for many of us because of the colors, the crisp air, the ripe pumpkins, and the celebration of Hal-LEO-ween! Leo is counting the days to his 5th birthday (yes—he’s a great counter!), and we are counting the days to gather our community of Leo supporters to celebrate his 5th birthday with love and support for him, Cora, and Jim. We often begin these letters with a Leo update and story. Here’s a little different birthday story: This story is about Alba and Anastasia—fabulous twins born with quadriplegic cerebral palsy. Alba has nonverbal quad CP, just like Leo, while Anastasia has the ability to speak. Both Alba and Anastasia, like Leo, are bright, and they are challenged by living in bodies that don’t respond to their brains’ directives. Alba and Anastasia are 29 years old this year, and both have gone to college—Alba to Queens College of New York, and Anastasia to Georgetown. Anastasia is now beginning graduate school at the London School of Economics. These fabulous young women’s accomplishments are incredible to imagine, and they are also possible for Leo. This Hall-LEO-ween, we invite you to dare to invest in and dream of Leo’s future. Ultimately, it is the gesture of our communal gift that is enormous. This year marks the 4th year that we have returned as a community connected only by a little boy who knows that his body doesn’t always cooperate with his intentions but that he is loved and supported. He has us—an extended group of family, friends, friends of friends, and generous strangers who join together at his birthday to cheer for him. Leo’s future is bright because you are part of the constellation of stars lighting Leo’s path. At whatever level you can, we invite you to contribute to Leo’s 5th birthday present and to share this letter with neighbors, friends, and family who might consider joining us. To contribute through PayPal, go to http://www.leotruefrost.blogspot.com. Alternatively, you can mail contributions in the form of a check (made out to C. Cora True-Frost or Jim True-Frost) to: Sydney Foster 4512 Riverdale Rd. Riverdale, MD 20737 Thank you for considering being a part of this annual effort to support this sweet boy. A special thank you to Liz Rynes, Dawn Boudria, Kayla Laynes, Rachel Ceruti, and all who recently supported their leadership to raise the funds for a special bicycle for Leo. Last May, Dr. Jan prescribed a Freedom Concepts DCP16 bicycle for Leo and allowed him to test drive one. To no one’s surprise, he loved it! Speaking of wheels, this year our dear Leo is considering being Chitty Chitty Bang Bang or a red sports car for his Halloween/birthday costume. :) He’s got a need for speed and for the magic love of all his angels. Happy Hal-LEO-ween again to all! With thanks and appreciation, Leo’s Angels Maud Abeel Alisa Berger Dana Callahan Sydney Foster Alisa Newman Hood Julie Johnson McVeigh Patrick McVeigh Amanda Pustilnik

Leo's bike has been ordered--so, too, has a swing!

Dear Friends, We are delighted to announce that thanks to your heart-warming support, Leo True-Frost will have an an adapted bicycle for his fifth birthday! The order was finalized yesterday, and Freedom Concepts assures the True-Frosts that the bicycle will arrive by October 29, in time for them to assemble it and to troubleshoot it. It is a red DCP-16 bicycle and will come with an iPad mount! In addition, Leo will have a Jenn-Swing installed in his backyard. The swing should accommodate him until he weighs 125 lbs--so it will be bring years of joy. The bicycle is expected to grow with him and to last at least five years. Hooray! Here's to strengthening Leo's muscles now, early on, to give him the optimal chance for use and strength later in time. Thank you all for making these very expensive gifts possible. Jim and Cora and Leo and Phoebe send their gratitude. Pictures to follow!

Update: $600 raised towards Leo's adaptive bike

Dear Friends, Thank you for helping make Leo's adaptive bike a reality. We are slowly but surely working towards our $5000 goal. Today we had the exciting news that Leo's newest angel, Shelley Simpson, has committed to contribute 50% of her JuicePlus+ profits for the month towards Leo's adaptive bike. Thank you so much, Shelley!!!! We can't wait to see Leo's face when he finally gets this bike. The bike should fit him for another four to five years, the sooner he gets it, the longer he'll have it! Love, Miles of Smiles for Leo Team

Operation Leo Bike!

Dear Friends and Members of Team Leo: Some of you may remember that Leo had the thrill of powering a bike for the first time during his visit to Dr. Jan in May. The bike that Dr. Jan prescribed for Leo is called a Freedom Concepts DCP16 (see: http://www.freedomconcepts.com/fc_products/f3-bike-series/discovery-series/dcp-16/), and the price will be at least $5000. These adapted bikes not only provide children with physical disabilities like Leo the opportunity to play with their able-bodied friends on a similar footing, they also offer a physically engaged way of getting around. Rather than passive modes of transportation like a power wheelchair or manual wheelchair, the hope would be that Leo would be able to gradually strengthen his legs and arms to self-propel the bike, and perhaps use the bike to get around at school, as a supplement to his powerchair. You may also remember that Jim and Cora entered Leo in a drawing to win a (different, and not as well-suited, but equally expensive) adaptive bike back in May. Leo did not win a bike, and Jim and Cora weren't quite sure how to proceed. They pursued insurance unsuccessfully. They looked for used versions of the bike unsuccessfully. Finally, faced with tens of thousands of dollars worth of disability-related expenses this year, they were persuaded by us to reach out to those who are ready to help Leo get a bike for the necessary support. This letter announces our effort to raise enough money to get our adorable friend Leo a bicycle. If you are able to contribute support, you can do so online through the link at the left. Or you can send a check made out to "C. True-Frost, c/o Dawn Boudria, 522 Quackenbos St. NW, Washington, DC 20011 No amount is too small. We are hoping to be able to order the bike for Leo soon. Leo's Former Caregivers United! Dawn, Liz, and Kayla

Hall-Leo-Ween 2012! Thank You So Much!

A huge thank you goes out to each of you. So far, not three days past Leo’s birthday, the True-Frosts have been able to get Leo his power chair controller – and Leo has already brought his power chair at school. In no time, he should be moving around the classroom and doing more of the things many other children take for granted. Leo is thrilled, and so are we. 2012 Friends of Leo Contributors Maud Abeel Joan Allen Kay & Ray Alvarez Sara Bakker Maryellen & Jack Bank Charles Barzun & Emily Little Laura & Chris Bauer Seth Beckerman Leslie Bender Christine Benson Corey Bettenhausen Anu & Travis Bradford Rachel Brewster & James Mulholland Jake Brooks Dana Callahan Jeff Christian Nancy Cole Tara Conklin & Nick Maddock Lara Corey Jared Craig & Katie Gill Stephanie Dant Justine Deutsch Kerry Donahue Laura Eason Sarah Fargo Daniel Fish Hilary Foster Sydney Foster Maxine Gere Jim Greiner & Jennifer Lewis Heather and Coy Green Anne Guillemet Brian Guthrie Mari Hinojosa George Joseph Janelle Jones Thomas Kane Chimene Keitner Lisa Bird Kelly Barbara Kingsley Terry Kinney Loren Kittilsen & Judd Spray Stuart Knoop Barbara Krekow Ronald Lebofsky John Leo Peter Leondedis Karen Liebermann Kathy & Ray Lindberg Domenick Lombardozzi Marilyn Lucas Wendy Madgwick Rebekah Maggor Wendy Marshall Sheila Mathis Laura McGrew Hilary & Alan McLeod Julie Johnson & Patrick McVeigh Jonathan Mintz Amanda Mujica Laurent Nauczyciel Barbara Neufeld Russ Neufeld & Jess Brooks Alisa Newman and Ludovic Hood Brian O'Neill Organized Artist Company Eloise Pasachoff & Tom Glaisyer Gordon Peake Stephanie Pezard Sharene Philip Kara Piccirilli Nancy Pinn Ananya Price Amanda Pustilnik Kenneth Pustilnik Donald Ratner MJ Regan Merle Reskin Elizabeth Rich Derick Rodgers Gary Rudoren Tracy Sallows Adam Saunders Brad & Hristina Schlagger David Schleicher Campbell Scott Lois Smith Sonja Starr Francesca Strumia Jeanne Tai Karen Thomas Courtney Tries Mac True Emily True Amy Tully Cheryl Turski Melanie Urdang Miriam Vogel & Will Shrank Leslie Williams Doug Wright & David Clement Also, a big apology regarding the spacing of this entry--blogger's not allowing me to hit a hard return after line. And a picture of Leo with his girlfriend on his birthday in the Treehouse room. THANK YOU, everyone!

Leo Sends a Shout Out to All of His New (and Old) Friends

ISAAC in Pittsburgh was super-informative! Leo is glad that our family made the 8-hour schlep to the conference for the International Society on Augmentative and Alternative Communication. We met new friends and got some good ideas about how to continue to support and stimulate Leo's interest in reading and spelling and talking. Leo and Phoebe both were troopers during the sessions and put in some long days. All towards the quest of improving communication!

We would never have been able to attend the conference without the wheelchair van. There is no way we would have had it in us to handle all of the reststops, etc. Thank you more than we can ever say, Team Leo!!!

THANK YOU!

Hooray! They say a picture is worth a thousand words. In this picture, those words are all about joy, relief, and gratitude!

Leo's first trip in the van was to the orthotist--what a total dream to roll in and out of the van to the appointment. The second trip was out running errands with dad, the type of trip he wouldn't have been able to go on before we had the van. The third trip was to church on Christmas. The fourth was to the airport and into a coffee shop with mom and dad, again the type of trip he would have made in a car seat or simply sat out and stayed home before the van.

Thank you all more than we can ever express!