This is a terrible nightmare. This can't possibly be happening to our daughter, to our family. This cannot be real.
These were the first thoughts that came tumbling in when we received the news that Lainey has an ultra-rare genetic genetic disorder called Alternating Hemiplegia of Childhood, or AHC, a disorder that affects just 1 in a million. On top of that, we were told Lainey has the gene mutation that typically causes the most severe symptoms of an already debilitating disorder. Our world was crumbling beneath our feet. And yet, after 5 months of worry, stress, and anxiety over abnormal eye and body movements, seizure-like behavior, and an overall gut feeling that something wasn't right, it was a relief to finally have a diagnosis; to finally have a place to focus our efforts and to fight like hell to take control of the situation.
As we began to research AHC, our already broken hearts were further torn to pieces with phrases like 'devastating neurological disorder' and 'like 7 disorders in 1.' But through all of the darkness, we also found some light and a reason to hope: we learned that there is a potential to cure this currently incurable disease.
Lainey just turned 2 and she has her whole life ahead of her, a life that we pray is filled with more joy and happiness than pain and suffering; a life where there isn't the threat of a paralysis episode lurking around every corner and where her body will no longer hold her hostage. We dream of days where nothing can interfere with her sly smile, lazy laugh, and her curious and determined spirit. She deserves better.
Paralysis, dystonia, seizures, eye movement, low tone, emergency meds, therapy, isolation, fear, helplessness. These are just a few of the words that we hope will be a distant memory for us with the hope of a cure. We are in a race against time. Help us Race to End AHC and to fight for a better future for Lainey and all of her fellow AHC warriors.
The Race to END AHC is on! For over 25 years the AHC Foundation has been in the race to treat or cure AHC for all our AHC kids. It has been a long race, and the foundation has covered much ground by taking many steps toward that goal.
Through research, education and family support, we have ONE MISSION: END AHC
Through these three pillars of our mission, the AHC Foundation works to provide the community support and hope as we all move through this journey. Funding RESEARCH from small studies to gene discovery, to collaboration on landmark gene therapy that holds much potential; providing EDUCATIONAL resources to families through support groups, introductions to physicians, and our website; SUPPORTING FAMILIES through our support group, biennial family meetings, and availability of volunteers for crisis; are all ways the AHC Foundation works to END AHC.
Join us in fundrasing to continue to provide resources to families, fund research with high potential, and raise awareness to rare disease.
Supporters | |||
Name | Date | Amount | Comments |
Mighty Cause | 06/29/2021 | $71,840.37 | Alicia Davis & Joe Nigro | 12/30/2020 | $10,000.00 | Ryan Beduhn | 11/02/2020 | $250.00 | This donation is for Lainey Matuska. Ryan Beduhn donation of $250 being matched by Marsh & McLennan Agency. Donation came through from Benevity.com | The VanOverbekes | 10/08/2020 | $154.79 | For Lainey! | Katie Hronski & Our Amazing Nu Skin Customers! | 10/06/2020 | $185.68 | Marcia Handahl | 10/04/2020 | $.00 | Brooke Valenta | 10/04/2020 | $103.30 | We love you Lainey! | Sarah Ahlberg | 10/04/2020 | $102.02 | We are fighting along side of you, our sweet warrior! We love you and are so excited to run for you today! | Marcia Handahl | 10/04/2020 | $800.00 | Love your spirit and strength, sweet Lainey! Prayer and Hope always for you! | Alexis Gibb | 10/04/2020 | $62.75 | The Amma Mammas walked for Lainey this morning!!! Lots of love from us. Lex, Laura B and Laura S | The Deutschobsons | 10/04/2020 | $103.30 | We love you, Lainey girl! | Anonymous Friend | 10/04/2020 | $21.21 | Sarah Kasner | 10/04/2020 | $100.00 | Lifting you up little Lainey! Gene therapy for so many diseases feels close but yet so far! I hope this moves the needle for AHC. | Sarah Scherbring | 10/04/2020 | $51.80 | Kathleen Matuska | 10/04/2020 | $103.30 | Donation from Donald Post | Kieran & Tater Carruthers | 10/03/2020 | $104.37 | To our best buddy & playmate, Lainey girl! We love you Lala | DAWN SCHMIEG | 10/03/2020 | $2,000.00 | Heidi ANDERSON-ISAACSON | 10/03/2020 | $51.80 | Lizette Bartholdi | 10/03/2020 | $31.20 | Irene O’Neill | 10/03/2020 | $51.80 | I love you Lainey! I am here for you!! ♥️Great Aunt Irene | Rosie Romportl | 10/03/2020 | $51.80 | Rich & Nancy Benson | 10/03/2020 | $100.00 | Hoping this helps in finding a cure! | Anonymous Friend | 10/03/2020 | $51.80 | Lainey - Thanks for organizing the walk for AHCF research! You are important. Julie | Mathew Simonsen | 10/03/2020 | $208.43 | Happy to help Lainey! Love the Simonsen family :) | Cecilia Konchar Farr | 10/03/2020 | $41.50 | Go scientists, go! Medical research for the win! | Stacey Dove | 10/02/2020 | $103.30 | You’ve got this, sweet Lainey! | Julie and Ralph Kytan | 10/02/2020 | $103.30 | For Lainey From Carl | Shannon Cooper | 10/02/2020 | $103.30 | Love and big hugs from Auntie Shanna and Uncle Ron Ron! | Marquita Oleson | 10/01/2020 | $50.00 | Loving Lainey!! | Patricia Wallway | 10/01/2020 | $51.80 | Joe Nigro | 09/30/2020 | $260.46 | James and Becca Michael | 09/29/2020 | $51.80 | Mary Matuska | 09/28/2020 | $100.00 | Love from great grandma and grandpa | Sue Mance | 09/28/2020 | $100.00 | Mary and Terry Hearst | 09/28/2020 | $206.28 | Jenny Steiner | 09/28/2020 | $31.20 | Jim and Judy Hollnbacher | 09/27/2020 | $100.00 | Keep smiling Lainey - love ya | Cynthia Norton | 09/27/2020 | $51.80 | Martha Phillips | 09/27/2020 | $51.80 | Mark Bakko | 09/27/2020 | $515.24 | We love you Lainey and will be walking/running for you. Love Mark & Peggy | David O’Neill | 09/27/2020 | $103.30 | Looking forward to running with you Lainey. Love, Mary and Dave. | Ryan Beduhn | 09/24/2020 | $257.78 | Love you Lainey! Marsh and McLennan is also matching this contribution! | Heather Dorsey | 09/24/2020 | $103.30 | Amazing strength! | Adam Butler | 09/23/2020 | $.00 | Kelsey Graf | 09/23/2020 | $.00 | Meghan Karschnik | 09/23/2020 | $.00 | Tess Hohman | 09/23/2020 | $31.53 | Keep smiling Lainey, you bring joy to all of us! | Meghan Karschnik | 09/23/2020 | $52.34 | Kelsey Graf | 09/23/2020 | $104.37 | Katie Doerer | 09/23/2020 | $78.36 | Always thinking and praying for Lainey and a cure for AHC!! We love you all! | The Butlers | 09/23/2020 | $51.80 | Let's do this! We love you, Lainey! | The Angell’s | 09/22/2020 | $51.80 | Christine and Luke Karlgaard | 09/22/2020 | $51.80 | We love you Lainey! ❤️ | Kolleen Fulop | 09/22/2020 | $51.80 | Mark Katie Ella and Caden Hronski | 09/22/2020 | $103.30 | Anna Nelson | 09/18/2020 | $52.34 | Sending lots of love! | Laura Obrien | 09/17/2020 | $52.34 | Keep smiling Lainey❤️ | Megan Bergman | 09/17/2020 | $206.28 | Britta Lang | 09/16/2020 | $.00 | Meghan Mason | 09/16/2020 | $41.94 | Beverly Hentges | 09/16/2020 | $102.02 | Anonymous Friend | 09/16/2020 | $52.34 | Britta Lang | 09/16/2020 | $257.78 | We love you Lainey! ❤️ | LH Gildensoph | 09/16/2020 | $31.20 | Sending love | Lainey Matuska | 09/15/2020 | $100.00 | For Lainey and her contagious smile ❤️ | Holly Ricker | 09/15/2020 | $500.00 | We support and love you Lainey. | Cindy Egeness | 09/15/2020 | $51.80 | Stephanie Benson | 09/14/2020 | $104.37 | Running for you, Lala! We love you so much!! Love, your fairy godparents and cuzzies | Sarah Taylor | 09/14/2020 | $206.28 | Anna Silverman | 09/14/2020 | $51.80 | I will be running for you Lainey!! Xoxo Love Auntie Anna and Uncle Toby, Cousin Preston | Stacie Matuska | 09/14/2020 | $103.30 | Our fight never stops to find a cure for our sweet Lainey! |
Total | $91,406.77 |