Ava’s Story – Rett Syndrome – RSRT – YouTube
Who is Ava? On most days, she is a cackling, wobbly walker who loves being outside and splashing in the bathtub. Ava can’t express her feelings or say the words “I love you”. Instead, her personality has to shine through stares, screeches, or hand reaches.
It doesn’t have to be this way.
In September 2021, Bryan and Lindsey received the official diagnosis that Ava has Rett syndrome. Quickly, the vision for the life they had imagined with her was dramatically altered. We learned she will probably never talk, and that she will require lifelong care. Her basic needs may change as certain skills she has acquired may go away. Rett keeps you on your toes like that.
Having Rett Syndrome has been described as having symptoms of Autism, Cerebral Palsy, and Epilepsy. Families affected by Rett syndrome never know what tomorrow might bring and live every day for the small victories – an unsteady step, an accidental nose pick (yes we cheered for it!), or the connection made in a single moment of the day where you can tell exactly what she wants.
We feel very fortunate that Ava began walking independently in October and continues to show everyone that she’s not letting up. Along the way, she’s found ways to adapt with her lack of skills. Before walking, she found her independence by speeding down the street on her toy airplane.
But all of her victories haven’t been without hardships. Ava breaks down in fits of frustration when she can’t communicate what she wants. She has visited more specialist doctors in her two years than most of us have in our lifetime.
There is light at the end of the tunnel. Research is truly on the cusp of finding a cure for this horrible syndrome. That’s why we have partnered with Rett Syndrome Research Trust, and hope you might join us in supporting this cause. Every dollar donated goes to the research and gives Ava a better chance at living a life she deserves.
We encourage everyone reading to learn more on this website’s homepage about the recent breakthroughs in science related to Rett syndrome.
We are all truly grateful for your support! It means the world to us because Ava is our world.
Love,
Susan Robenalt and Cindy Watson (Grandmothers to Ava)
Ava's Superhero
7 Donors
Ava's Hero
3 Donors
Ava's Champion
29 Donors
Ava's Supporter
28 Donors
Ava's Advocate
191 Donors
| Name | Donation Amount | Date |
|---|---|---|
| Jeffrey Concepcion | $15,000.00 | May 30, 2023 |
| Stratos Wealth Partners | $10,000.00 | May 22, 2023 |
| Chris Walling | $100.00 | May 16, 2023 |
| Dan Whittenburg | $500.00 | May 15, 2023 |
| Peggy & Tom Murphy | $300.00 | May 12, 2023 |
| Ryan Hunter | $50.00 | May 11, 2023 |
| Susan and David Robenalt | $5,000.00 | May 11, 2023 |
| Michael Woods | $100.00 | May 11, 2023 |
| Chad Warrick | $250.00 | May 11, 2023 |
| Charlie Mylonas | $100.00 | May 11, 2023 |
| Robert Hays | $1,000.00 | May 11, 2023 |
| Janice McGarity | $250.00 | May 11, 2023 |
| Craig Macomber | $1,000.00 | May 11, 2023 |
| Erica Gargol | $100.00 | May 11, 2023 |
| Barbara Meola | $200.00 | May 11, 2023 |
| Ken Bielejeski | $100.00 | May 11, 2023 |
| Barbara Simons | $100.00 | May 11, 2023 |
| Robert Samson | $100.00 | May 11, 2023 |
| Frank Perfetuo | $100.00 | May 11, 2023 |
| Kathryn Louttit | $100.00 | May 11, 2023 |
| OUTCOME Private Wealth | $1,000.00 | May 11, 2023 |
| Anonymous | $100.00 | May 11, 2023 |
| Rhonda Jimerson | $100.00 | May 11, 2023 |
| James Lupica | $250.00 | May 11, 2023 |
| Amy Nielsen | $25.00 | May 11, 2023 |
| Martin Swiecki | $100.00 | May 11, 2023 |
| Paula Strumbly | $100.00 | May 11, 2023 |
| Anonymous | $100.00 | May 11, 2023 |
| Eric Susi | $200.00 | May 11, 2023 |
| Weston Reinbolt | $100.00 | May 11, 2023 |
| Anonymous | $100.00 | May 11, 2023 |
| Anonymous | $20.00 | May 11, 2023 |
| Helene Rude | $100.00 | May 11, 2023 |
| Anonymous | $100.00 | May 11, 2023 |
| John Zakel Jr | $100.00 | May 11, 2023 |
| Callen Schramm | $100.00 | May 11, 2023 |
| Rob Patti | $100.00 | May 11, 2023 |
| Robert Meyer | $100.00 | May 11, 2023 |
| Taylor Salisbury | $100.00 | May 11, 2023 |
| William Van Kirk | $100.00 | May 11, 2023 |
| Marcia Ramos | $100.00 | May 11, 2023 |
| Sam Bernard | $20.00 | May 11, 2023 |
| Anonymous | $100.00 | May 11, 2023 |
| Paul Tramontozzi | $50.00 | May 11, 2023 |
| Sharon Barton | $100.00 | May 11, 2023 |
| Claiborne Perrilliat | $100.00 | May 11, 2023 |
| Jimmy Wells | $100.00 | May 11, 2023 |
| Philip Garrett | $100.00 | May 11, 2023 |
| Clare Frederick | $500.00 | May 11, 2023 |
| Nina Hajjar | $250.00 | May 11, 2023 |
| Grant Ulrick | $100.00 | May 11, 2023 |
| Joe Waterman | $100.00 | May 11, 2023 |
| Christopher Radzinski | $53.00 | May 11, 2023 |
| Frederick Cook | $100.00 | May 11, 2023 |
| Anonymous | $25.00 | May 11, 2023 |
| Jeff Mucci | $100.00 | May 11, 2023 |
| Charles Shapiro | $500.00 | May 11, 2023 |
| Adam Rude | $100.00 | May 11, 2023 |
| Kelli Gargasz | $500.00 | May 11, 2023 |
| Chandon Simonis | $100.00 | May 11, 2023 |
| Joe Swiderski | $100.00 | May 11, 2023 |
| Dublin A.M. Rotary | $5,000.00 | May 10, 2023 |
| Paul & Dwight Kinnischtzke | $50.00 | May 05, 2023 |
| Sandy Riehl | $100.00 | April 26, 2023 |
| Cynthia Gerding | $50.00 | April 21, 2023 |
| Zora Freeman | $100.00 | April 20, 2023 |
| Jim & Karen Waters | $200.00 | April 14, 2023 |
| Robert Watson | $200.00 | April 13, 2023 |
| Elle Stevens | $100.00 | April 13, 2023 |
| Amgen match of Derek Wallace | $500.00 | April 12, 2023 |
| Beverly Kiehl | $100.00 | March 13, 2023 |
| Andrea Hinman | $500.00 | March 04, 2023 |
| Lee Hays | $100.00 | March 02, 2023 |
| Derek Wallace | $250.00 | March 01, 2023 |
| Steve/ Cindy Watson | $2,000.00 | February 14, 2023 |
| Sandra Hipsher | $100.00 | February 09, 2023 |
| David Holmes | $50.00 | February 07, 2023 |
| Abbie Krekel | $500.00 | February 06, 2023 |
| Amy Fitzgibbons | $500.00 | January 25, 2023 |
| Eunice Nelson | $50.00 | January 05, 2023 |
| Arthur Goodell | $100.00 | January 01, 2023 |
| Rae Lynn Ortega & Justin Wright | $100.00 | December 31, 2022 |
| Beth Allen | $100.00 | December 30, 2022 |
| Doug & Cindy Robenalt | $100.00 | December 29, 2022 |
| Felecia Sharp | $100.00 | December 28, 2022 |
| Craig Offield | $100.00 | December 23, 2022 |
| Chika and Harriet Nagata | $100.00 | December 20, 2022 |
| Roger Stegmaier | $300.00 | December 19, 2022 |
| Theresa Wilkins | $50.00 | December 17, 2022 |
| Bob and Nancy Balthaser | $100.00 | December 16, 2022 |
| Henry Voorhees | $800.00 | December 15, 2022 |
| Susan Pattison | $50.00 | December 14, 2022 |
| Susan & James Wright | $5,000.00 | December 12, 2022 |
| Sharon Casey | $500.00 | December 12, 2022 |
| Cheryl Konter | $100.00 | December 11, 2022 |
| Colleen Henderson | $1,000.00 | December 11, 2022 |
| Deborah Rodgers | $100.00 | December 09, 2022 |
| Janet Clampitt | $100.00 | December 08, 2022 |
| Christyne Nasbe | $100.00 | December 07, 2022 |
| Wesley Hardin | $100.00 | December 07, 2022 |
| Susan & Bradley Holmes | $500.00 | December 05, 2022 |
| Chelsea Lempke | $20.00 | November 30, 2022 |
| Hope Prout | $25.00 | November 30, 2022 |
| Arlene Furman | $250.00 | November 29, 2022 |
| Carol Kinsey Merrill | $50.00 | November 29, 2022 |
| Linda Cochran | $100.00 | November 28, 2022 |
| Dorcas & Bill Briscoe | $1,000.00 | November 28, 2022 |
| Claire Stafford | $250.00 | November 15, 2022 |
| $1,130.00 | November 08, 2022 | |
| Cynthia (Juanita) Watson (Rohde) | $100.00 | November 01, 2022 |
| Susan Pattison | $50.00 | November 01, 2022 |
| Mary Tilley | $50.00 | October 31, 2022 |
| Anonymous | $20.00 | October 24, 2022 |
| Alene Hardin | $100.00 | October 22, 2022 |
| Dan Block | $100.00 | October 21, 2022 |
| Robert Watson | $100.00 | October 21, 2022 |
| Adam Strachn | $100.00 | October 20, 2022 |
| Susan Wright | $100.00 | October 17, 2022 |
| Beverly Kiehl | $100.00 | October 10, 2022 |
| Maureen & Tom Pedrick | $1,000.00 | September 07, 2022 |
| Amy Fitzgibbons | $100.00 | August 17, 2022 |
| LPL Matching gift Susan Robenalt | $500.00 | August 09, 2022 |
| LPL Matching gift Barbara Meola | $100.00 | August 09, 2022 |
| Sharon Casey | $1,000.00 | August 05, 2022 |
| Judy Hoover | $150.00 | July 13, 2022 |
| Kevin Falk | $1,500.00 | July 12, 2022 |
| Anonymous | $100.00 | June 27, 2022 |
| Sunny Bright | $100.00 | June 14, 2022 |
| Paul Gale | $1,000.00 | June 12, 2022 |
| Alene Hardin | $100.00 | June 05, 2022 |
| Kim OConnell | $200.00 | June 04, 2022 |
| Sandra Hipsher | $50.00 | June 02, 2022 |
| Carol Merrill | $100.00 | June 01, 2022 |
| Allyson Hillyard | $100.00 | May 29, 2022 |
| Nancy Brackmann | $100.00 | May 28, 2022 |
| Barbara Meola | $100.00 | May 27, 2022 |
| Lee Hays | $100.00 | May 25, 2022 |
| Susan Miller | $100.00 | May 24, 2022 |
| Nancy Longenbaker | $200.00 | May 22, 2022 |
| Michael O’Connell | $500.00 | May 19, 2022 |
| Rod & Wendee Henry | $40.00 | May 16, 2022 |
| Jeff Applewhite | $100.00 | May 10, 2022 |
| Wanda & Wayne Adams | $1,500.00 | May 03, 2022 |
| Julie Klawon | $100.00 | April 18, 2022 |
| Doreen & Kevin Kerr | $100.00 | April 15, 2022 |
| Sandra Riehl | $100.00 | April 15, 2022 |
| Dublin A.M. Rotary Club | $3,000.00 | April 01, 2022 |
| Susan & David Robenalt | $5,000.00 | April 01, 2022 |
| Barbara Thompson | $100.00 | March 16, 2022 |
| Pam Mennella | $100.00 | March 15, 2022 |
| Cynthia Watson | $2,500.00 | March 08, 2022 |
| Anonymous | $100.00 | March 03, 2022 |
| John & Sostella McGaw | $50.00 | March 02, 2022 |
| Patti Hays Brooks | $50.00 | February 27, 2022 |
| Anonymous | $50.00 | February 27, 2022 |
| Anonymous | $50.00 | February 27, 2022 |
| Marilyn & David Ryerson | $1,000.00 | February 25, 2022 |
| Cameron and Lynley Geer | $250.00 | February 23, 2022 |
| Theresa Wilkins | $50.00 | February 23, 2022 |
| Julie Cullen | $50.00 | February 22, 2022 |
| Dublin A.M. Rotary Club | $231.00 | February 16, 2022 |
| Arlyn Widenhoefer | $50.00 | February 16, 2022 |
| Kimberlee Kiehl | $100.00 | February 11, 2022 |
| Anonymous | $50.00 | February 07, 2022 |
| Abbie Krekel | $500.00 | February 05, 2022 |
| Tommy Pfeiffer | $100.00 | February 05, 2022 |
| Anonymous | $50.00 | February 05, 2022 |
| Trent Bird | $20.00 | February 05, 2022 |
| Robert Hays | $1,000.00 | February 05, 2022 |
| Steve Schwanekamp | $100.00 | February 04, 2022 |
| Leon & Beverly Mascofff | $50.00 | February 04, 2022 |
| Lois Sprick | $100.00 | February 03, 2022 |
| Amanda Watson | $50.00 | January 31, 2022 |
| Anonymous | $130.00 | January 30, 2022 |
| Nancy Balthaser | $100.00 | January 28, 2022 |
| Richard Poach | $100.00 | January 26, 2022 |
| Joseph Mowad | $100.00 | January 24, 2022 |
| Karen Wagenbrenner | $100.00 | January 21, 2022 |
| Anonymous | $250.00 | January 21, 2022 |
| GERALDINE MACDUFFIE | $100.00 | January 20, 2022 |
| Christopher Amatos | $1,000.00 | January 19, 2022 |
| JOHN Kendall | $100.00 | January 17, 2022 |
| Kevin Falk | $1,000.00 | January 11, 2022 |
| Sheldon Rohde | $100.00 | January 04, 2022 |
| Caroline Kline | $300.00 | January 04, 2022 |
| Matthew Powell | $100.00 | January 03, 2022 |
| Deborah McCann | $100.00 | January 02, 2022 |
| Rae Ortega | $100.00 | December 31, 2021 |
| Bill & Susan Shepard | $100.00 | December 29, 2021 |
| Harriet & Chicka Nagata | $100.00 | December 24, 2021 |
| Allison Pressley | $100.00 | December 18, 2021 |
| Jordan Schram | $100.00 | December 17, 2021 |
| Jennifer Landrum | $100.00 | December 17, 2021 |
| Violet & Jordan Anderson | $500.00 | December 16, 2021 |
| Yolanda Nagata | $200.00 | December 16, 2021 |
| Juanita Rohde | $1,000.00 | December 16, 2021 |
| Michael Lehr | $100.00 | December 13, 2021 |
| Roger Williams | $200.00 | December 12, 2021 |
| Sarah Walker | $100.00 | December 11, 2021 |
| John Schumacher | $1,000.00 | December 10, 2021 |
| Hannah Hays | $250.00 | December 09, 2021 |
| Carrie Kiesel | $100.00 | December 08, 2021 |
| Gene McMahon | $100.00 | December 08, 2021 |
| LPL Foundation | $500.00 | December 08, 2021 |
| Virginia & Donald Smith | $100.00 | December 08, 2021 |
| Craig Offield | $100.00 | December 08, 2021 |
| Wes Hardin | $100.00 | December 07, 2021 |
| Kortney Cervantes | $300.00 | December 07, 2021 |
| Anonymous | $100.00 | December 07, 2021 |
| Henry Voorhees | $1,000.00 | December 06, 2021 |
| Arthur Goodell | $100.00 | December 06, 2021 |
| Deborah Archer | $100.00 | December 05, 2021 |
| Rachel Hays | $30.00 | December 04, 2021 |
| Cynthia Watson | $2,500.00 | December 03, 2021 |
| Donald and Barbara Gier Sr. | $500.00 | December 02, 2021 |
| Jennifer Gale | $500.00 | December 02, 2021 |
| Janet Clampitt | $100.00 | December 02, 2021 |
| Anonymous | $50.00 | December 01, 2021 |
| Anonymous | $1,000.00 | December 01, 2021 |
| Anonymous | $100.00 | December 01, 2021 |
| Anonymous | $25.00 | December 01, 2021 |
| Anonymous | $100.00 | November 30, 2021 |
| Linda Guyton | $100.00 | November 30, 2021 |
| Donna Naylor | $100.00 | November 30, 2021 |
| Karen Shively | $100.00 | November 30, 2021 |
| William Dobbertin | $100.00 | November 30, 2021 |
| Carol Merrill | $500.00 | November 30, 2021 |
| Christyne Nasbe | $500.00 | November 30, 2021 |
| Brittany Watson | $100.00 | November 29, 2021 |
| Robert Watson | $1,000.00 | November 29, 2021 |
| Nick Immell | $100.00 | November 29, 2021 |
| Dianna McCauley | $100.00 | November 28, 2021 |
| Franklin Prout | $100.00 | November 27, 2021 |
| Charles Kachulis | $100.00 | November 25, 2021 |
| Richard Cheffer | $1,000.00 | November 25, 2021 |
| Jeffrey Concepcion | $1,000.00 | November 22, 2021 |
| Richard Quattrone | $100.00 | November 22, 2021 |
| Roger & Vianne Stegmaier | $500.00 | November 21, 2021 |
| Anonymous | $500.00 | November 21, 2021 |
| Kristen Shepherd | $300.00 | November 21, 2021 |
| Nate Ferguson | $100.00 | November 21, 2021 |
| Lindsay Ratai | $100.00 | November 21, 2021 |
| Molly Hampton | $50.00 | November 20, 2021 |
| Kristin McLean | $100.00 | November 20, 2021 |
| Caroline Revell | $500.00 | November 19, 2021 |
| Richard Wight | $100.00 | November 19, 2021 |
| Sandra Hipsher | $100.00 | November 19, 2021 |
| Shannon ANDERSON | $25.00 | November 19, 2021 |
| Amy Barnhart | $100.00 | November 19, 2021 |
| Kelsey Lenzmeier | $100.00 | November 19, 2021 |
| Alene Hardin | $500.00 | November 19, 2021 |
| Colleen Henderson | $1,000.00 | November 19, 2021 |
| Jeffrey Linebaugh | $100.00 | November 19, 2021 |
| John Hall | $50.00 | November 19, 2021 |
| elizabeth johnson | $50.00 | November 19, 2021 |
| Paul Bramall | $500.00 | November 19, 2021 |
| Anonymous | $50.00 | November 19, 2021 |
| Anonymous | $500.00 | November 19, 2021 |
| John Van Cleaf | $100.00 | November 19, 2021 |
| Scott Banning | $50.00 | November 19, 2021 |
| Lee Flagg | $100.00 | November 19, 2021 |
| Eric Snyder | $100.00 | November 19, 2021 |
| Armen Kenareki | $200.00 | November 19, 2021 |
| Terri and Duane Long | $100.00 | November 19, 2021 |
| Todd Shipman | $300.00 | November 19, 2021 |
| Howard Bernstein | $100.00 | November 19, 2021 |
| Kevin Pickering | $100.00 | November 19, 2021 |
| Kristen Odenbach | $100.00 | November 19, 2021 |
| Pamela Kirk | $100.00 | November 19, 2021 |
| Chelsey Luvin | $75.00 | November 19, 2021 |
| William Heagy | $100.00 | November 19, 2021 |
| Sean O’Leary | $100.00 | November 19, 2021 |
| Justin Dahan | $100.00 | November 19, 2021 |
| Donna Roll | $50.00 | November 19, 2021 |
| Anonymous | $100.00 | November 19, 2021 |
| Byrne Tim | $100.00 | November 19, 2021 |
| Anonymous | $50.00 | November 18, 2021 |
| Seth Richart | $20.00 | November 18, 2021 |
| Carrie Hays | $50.00 | November 18, 2021 |
| Mandy Patrick | $100.00 | November 18, 2021 |
| Thomas Marotta | $500.00 | November 18, 2021 |
| Dave Brown | $100.00 | November 18, 2021 |
| Mounir Siblini | $100.00 | November 18, 2021 |
| Karen Zelevinsky | $100.00 | November 18, 2021 |
| Gabe Turcsanski | $25.00 | November 18, 2021 |
| Anonymous | $1,000.00 | November 18, 2021 |
| Christopher Thompson | $1,000.00 | November 18, 2021 |
| Anonymous | $500.00 | November 18, 2021 |
| Anonymous | $250.00 | November 18, 2021 |
| Anonymous | $100.00 | November 18, 2021 |
| Anonymous | $100.00 | November 18, 2021 |
| Anonymous | $100.00 | November 18, 2021 |
| Mike Woodbury | $50.00 | November 18, 2021 |
| Ben Miller | $25.00 | November 18, 2021 |
| Tim Leonard | $100.00 | November 18, 2021 |
| William McReynolds | $100.00 | November 18, 2021 |
| Kevin Maceri | $100.00 | November 18, 2021 |
| Kevin Meyn | $100.00 | November 18, 2021 |
| Besecker David | $100.00 | November 18, 2021 |
| Steven Boyd | $100.00 | November 18, 2021 |
| James Arena | $100.00 | November 18, 2021 |
| Karlyn Kagy | $100.00 | November 18, 2021 |
| Anonymous | $1,000.00 | November 18, 2021 |
| Anonymous | $100.00 | November 18, 2021 |
| Anonymous | $100.00 | November 17, 2021 |
| Anonymous | $1,000.00 | November 17, 2021 |
| Dorcas Briscoe | $1,000.00 | November 17, 2021 |
| Susan & David Robenalt | $5,000.00 | November 17, 2021 |