Lainey has been diagnosed with a devastating neurological disease called Alternating Hemiplegia of Childhood (AHC). The disease constitutes bouts of paralysis lasting minutes, to hours, to days. This paralysis will sometimes alternate from one side of the body to the other, other times it will affect the whole body and it also causes global cognitive and physical impairment/delay. Additionally, about 50% of children with this disease have epilepsy which is the case for Lainey. This disease is literally 1 in a million. There are only 300 known cases in the United States and 1,000 known cases in the world.
There is currently no cure for this disease and there are limited medications available that have variable success in managing the painful and completely disruptive symptoms. BUT, there is HOPE! Cure AHC, AHC Foundation and Hope for Annabel have been working together on a gene therapy effort using Adeno Associated Virus (AAV) as a delivery system for functioning ATP1A3 to compensate for the mutated ATP1A3 associated with AHC. Gene therapy provides a path to a cure for AHC.
Lainey’s future is incredibly uncertain and we aren’t willing to sit around and let this disease strip her of a full life. Please help us in making a donation to find a cure for this devastating disease.
With funds raised from the AHC Foundation, we will support AAV gene therapy and other research related to the project. We believe a path has been identified to a viable permanent treatment: gene therapy. The gene therapy we propose will involve inserting a functional copy of the ATP1A3 gene into a virus (an adeno-associated virus or AAV) that has been stripped of its harmful payload and its ability to reproduce. The virus will then be injected into the cerebrospinal fluid and will carry the functional gene to the cells in the brain that are failing. By delivering additional functional copies of the gene, we should be able to rescue those cells, and treat the disease permanently.
|Anonymous Friend||07/16/2019||$200.00||Mariam and David Grigoryan||07/09/2019||$100.00||Prayers and positive healing energy to you and all those affected||Prime Therapeutics||06/25/2019||$988.00||Catherine Hafdahl||06/24/2019||$50.00||LifeCore yoga||06/15/2019||$790.00||General Mills matching||06/15/2019||$2,262.00||Andrea Klosner||06/11/2019||$50.00||Anonymous Friend||06/10/2019||$100.00||Colleen Geraty||06/07/2019||$50.00||Melissa Schwartz||05/13/2019||$100.00||Anonymous Friend||04/30/2019||$50.00||Prays to your family.||Anonymous Friend||04/29/2019||$500.00||Sending love and great hope!||Marcia Handahl||04/29/2019||$500.00||Love and prayers are sent your way!!||Robert Ertel||04/28/2019||$200.00||Sheila Handahl||04/24/2019||$300.00||Cheryl Karlgaard||04/23/2019||$50.00||We pray for a cure for AHC!! We love you Lainey Don and Cheryl||Ken & Terri Andrzejewski||04/22/2019||$100.00||God Bless you and your family!||Evereve||04/18/2019||$2,502.21||Wolffs & Cigna||04/15/2019||$242.57||Anonymous Friend||04/13/2019||$50.00||Medtronic Corporate Matching||04/11/2019||$5,380.00||Thrivent Corporate Matching||04/11/2019||$5,000.00||Vicki Peterson||04/08/2019||$50.00||Bridget Bakko||04/08/2019||$250.00||Hopeful for a cure! Sending love and well-wishes from Jax||Brian & Kathy Blanchard||04/06/2019||$100.00||Blair Lyerly-Samuelson||04/05/2019||$50.00||Sending our love and hope for a cure, The Lyerly-Samuelson Family.||Jesse and Stacy Ellens||04/05/2019||$500.00||Sending prayers!||Robert Ertel||04/05/2019||$100.00||Brian Fahey||04/05/2019||$50.00||Ed Zarembo||04/05/2019||$200.00||There's nothing much I can really say. I got a hold of your letter through Bob Ertel. This is extremely devastating news. I'm very sorry to hear about Lainey's diagnosis and I can't even imagine what you're going through. I sincerely hope the medical folks are able to help her in some way through research and this gene therapy project. -Ed Z||Dan, Sarah, John, Annika Karlgaard||04/05/2019||$100.00||Anonymous Friend||04/04/2019||$50.00||Ray Hoover||04/04/2019||$100.00||Stacie, I'm so very sorry your family is going through this. Though we only knew each other for 3 years 15 years ago, I'm not at all surprised to find you facing this tragedy head on. I can only hope Lainey has the same strength and perseverance that her mom does. -Ray||Stacie Matuska||04/01/2019||$1,000.00||Donation from Matuska family and friends||Rob Matuska||04/01/2019||$1,000.00||Donation from Matuska family and friends||Laurie & Bill Leitch/Gorcica||03/28/2019||$100.00||Please know that we and many others at Atonement hold you all in our arms, and send healing thoughts and prayers to your entire family.||Lainey Matuska||03/28/2019||$50.00||Love, hope and prayers for sweet Lainey and the Matuska Family!||Andrew Miller||03/27/2019||$100.00||Stay strong, Lainey.||Nicole Schafer||03/26/2019||$250.00||Paul Dorey||03/25/2019||$50.00||Elaine & Phil Alman||03/21/2019||$50.00||Hopes and prayers for a cure for beautiful Lainey Matuska.||J.A. Wedum Foundation||03/19/2019||$5,000.00||Stephanie Benson||03/17/2019||$500.00||Donating on behalf of Holly and Scott Ricker||Anonymous Friend||03/17/2019||$50.00||Jan and Ray Zittlow||03/16/2019||$100.00||Lizza Sue Photography||03/15/2019||$150.00||Without hesitation Kelly was the very first to jump in and support this cause! I'm so happy we can support AHC and push for a CURE!!!!!||Lizza Sue Photography||03/15/2019||$125.00||Mamma to be, Meredith is happy to be supporting this cause!||Lizza Sue Photography||03/15/2019||$300.00||Lizza Sue Photography||03/15/2019||$50.00||Lizza Sue Photography||03/15/2019||$150.00||Praying for this little girl and others for a CURE!||Jaki & Jan Aamodt||03/14/2019||$100.00||Our prayers are with all of you.||Anonymous Friend||03/14/2019||$100.00||While I don't know Lainey personally, her story and courage has touched my heart.||Raj and Emily Chaphalkar||03/14/2019||$50.00||Love from your friends in Saint Joseph/Collegeville.||Nicole Becker||03/13/2019||$25.00||Prayers you get your cure!||Kelsey Kackman||03/13/2019||$100.00||Praying for Lainey!||Anonymous Friend||03/12/2019||$100.00||For Lainey and hope for a cure!||Chris Pettit||03/10/2019||$50.00||Scott Arundel||03/09/2019||$50.00||Joel and Alyssa Fisher Family Fund||03/08/2019||$1,500.00||Julia & Greg Broge||03/06/2019||$50.00||Praying for strength for Lainey and your entire family! Also praying that through the research, they will find a cure!||Fermoyle and Stanislav family||03/05/2019||$100.00||In Honor of: Lainey Matuska and research into her condition||Erin Phillips||03/04/2019||$50.00||It takes a village to raise beautifully special children!||Anonymous Friend||03/04/2019||$100.00||Nicole Douvier||03/03/2019||$25.00||Phil & Nancy Sturlaugson||03/03/2019||$250.00||Hoping for a cure!||Irene and Karen||03/02/2019||$100.00||With hope and love for Lainey.||Anne May||02/28/2019||$50.00||Jennifer Deising||02/28/2019||$25.00||Luke, Christine, Sophia, William, and Kennedy Karlgaard||02/28/2019||$100.00||Kevin Winneroski||02/26/2019||$50.00||Erin Schwind||02/26/2019||$250.00||Karee, John and Paige Lucchese||02/26/2019||$50.00||Margie Oleson||02/25/2019||$100.00||Sending love and prayers!||Stephanie Benson||02/25/2019||$500.00||Donation on behalf of Mom Handahl :)||Laura Saltzstein||02/24/2019||$50.00||Keeping your family in my thoughts all the time!||Dina Barsky||02/24/2019||$50.00||Sending you prayers and patience as they find a cure!||Leslie Robertson||02/24/2019||$100.00||Praying for Lainey!||Nancy Ly||02/23/2019||$80.00||Sending love, faith and warmth to Lainey and her family.||Lorrie & Joe Tucker||02/23/2019||$75.00||Keeping you in our prayers.||Michelle Milless||02/22/2019||$50.00||Sending love and prayers to Lainey and your family.||Anonymous Friend||02/22/2019||$30.00||Rachel and Sam Collette||02/22/2019||$50.00||Jessica Holck||02/22/2019||$50.00||Love and prayers each day!||Robert Ricker||02/22/2019||$100.00||Uncle Bob and Oma Ricker are sending love and prayers your way!||Maria Simmons (Amaro)||02/22/2019||$100.00||Praying for your precious girl!||Anonymous Friend||02/21/2019||$50.00||Emma Swank||02/21/2019||$200.00||Dear family, I believe Lainey will get the treatment she needs. She is so precious and so loved. Sending love from Japan! Xo||Jenny Jurek||02/21/2019||$100.00||Prayers for your family as you fight for a cure for your sweet baby girl.||Anna Judnick||02/21/2019||$75.00||Danielle Lewis||02/21/2019||$100.00||Brigette Kerber||02/21/2019||$50.00||Supporting you through this fight! In honor of our sweet angel Lynnea||Sayuri Sakamoto||02/21/2019||$100.00||May all be happy,||Kevin Wellmann||02/21/2019||$1,000.00||Praying for a cure.||Josh Wille||02/20/2019||$50.00||Joe Sebesta||02/20/2019||$50.00||Caitlin Linster||02/20/2019||$20.00||For a beautiful family.||Ryan & Kate Campbell||02/20/2019||$100.00||Sending our love and prayers to Lainey and family.||Gaby & Lexi Mielke||02/20/2019||$150.00||We love you Lainey!||William Estrem||02/20/2019||$50.00||Good luck dealing with this terrible illness. I hope they are able to come up with a cure.||Kalley Leer||02/20/2019||$50.00||Sending love and strength to you all.||Anonymous Friend||02/20/2019||$100.00||For Lainey and a cure||Colin Waitt||02/20/2019||$50.00||Jessica & Scott Snyder||02/20/2019||$100.00||Keep fighting and never lose hope! Lainey and her amazing family will be in our prayers.||Steve & Pat Ahlberg||02/20/2019||$200.00||Love and prayers for all of you||Alexis Gibb||02/20/2019||$100.00||Jessica Evans||02/20/2019||$50.00||Sending our love and prayers!||Maggie + Marshall Jacobson||02/20/2019||$100.00||Anonymous Friend||02/20/2019||$40.00||Anita & Bob Carlson||02/20/2019||$50.00||Praying for Lainey!||Anonymous Friend||02/20/2019||$20.00||Praying for your sweet little girl!||Kevin Bergeson||02/20/2019||$20.00||Go Lainey!||Melinda Sundquist||02/20/2019||$50.00||Though she be but little, she is fierce...Shakespeare||Anonymous Friend||02/20/2019||$50.00||Praying for you.||Tessa Strack||02/20/2019||$50.00||Mary Gebhart||02/20/2019||$25.00||From Peter Newby and Mary Gebhart friends of Mary Lou Will.||Ryan & Elizabeth Johnston||02/20/2019||$50.00||Praying for you, Lainey!||Kim and Kevin Burck||02/20/2019||$50.00||Mark Greco||02/20/2019||$50.00||Jen & Christian Quie||02/19/2019||$100.00||Prayers & Love for Lainey!||Jon Sauer||02/19/2019||$200.00||Praying for you, Lainey!||Anna & Nick Lovas||02/19/2019||$100.00||Praying for Lainey & family.||Melissa Konrad||02/19/2019||$50.00||Craig Rueter||02/19/2019||$25.00||Mostafa Toloui||02/19/2019||$100.00||Anne Hill||02/19/2019||$50.00||Lainey, you have incredible parents who are going to stop at nothing to do their best for you. We have you in our thoughts sweet little girl!!!! -The Hills||Nick & Gaby Wenck||02/19/2019||$50.00||Sending a hug your way from Amelia!||Kris Andre||02/19/2019||$20.00||Praying for Lainey!!||Rob & Jess Williams||02/19/2019||$50.00||Laura Loehrs||02/19/2019||$500.00||Shannon Schneider||02/19/2019||$50.00||Sending you all our prayers sweet baby girl<3 The Schneider’s||Kelly Backes||02/19/2019||$500.00||Praying for sweet little Lainey! Love, the Backes Family||Taylor Pacyna||02/19/2019||$50.00||Amanda Alex & Alaina Meyer||02/19/2019||$100.00||For Lainey. For the cure!||Megan Fritz||02/19/2019||$100.00||Anonymous Friend||02/19/2019||$500.00||Praying||Anonymous Friend||02/19/2019||$25.00||Brooke Johnson||02/19/2019||$100.00||Thinking of your entire family. Lifting you up in prayers||Ryan, Amanda, Clark, Hadley & Archer Wahlund||02/19/2019||$300.00||Jesus Espina-Velosa||02/19/2019||$100.00||Wishing you the best!||Claire Lande||02/19/2019||$100.00||The Angell Family||02/18/2019||$100.00||Sending our love and prayers.||Danielle Hoag||02/18/2019||$100.00||Sending all our love to sweet little Lainey! xoxo||Anonymous Friend||02/18/2019||$25.00||Anna Nelson||02/18/2019||$50.00||Josh & Christina Kraft||02/18/2019||$100.00||Sending our thoughts, love, and prayers.||Jon & Jess Pasek||02/18/2019||$100.00||Anne Jewison||02/18/2019||$25.00||Steph Benson shared your story. Prayers for your family and those working to find a cure for this.||Andrea, Miah, Lila, Zach Becker||02/18/2019||$100.00||Praying for Lainey!! ❤️||Anonymous Friend||02/18/2019||$50.00||Laura and Alex Westberg||02/18/2019||$100.00||We're rooting for you!||Emma Wick||02/18/2019||$5.00||Kolleen Fulop||02/18/2019||$300.00||Praying for Lainey!||Patrick Brown||02/18/2019||$50.00||Anonymous Friend||02/18/2019||$50.00||Prayers for Lainey||Tom & Joyce O'Neill||02/18/2019||$100.00||All our love and prayers||Sam and JoJo Barthell||02/18/2019||$100.00||Megan Foehrenbacher||02/18/2019||$40.00||Hugs to Lainey and your family!||Holly O’Hanlon||02/18/2019||$50.00||Our thoughts are with you all and sweet Lainey! ~ The Brierley Family||Anonymous Friend||02/18/2019||$50.00||Thinking of you all and hoping your prayers are answered quickly.||Lesley Kurowski||02/18/2019||$50.00||Sending prayers ❤️||Bob and Mary Matuska||02/18/2019||$100.00||Sue Mance||02/18/2019||$100.00||Erin Koshiol||02/18/2019||$50.00||Rob & Katie Mark||02/18/2019||$100.00||Sending our love. ❤️||The Wolff's||02/18/2019||$250.00||You've got this baby girl!||Mark Bakko||02/18/2019||$1,000.00||Sending our love, prayers, and hugs to your whole family.||Andy & Amanda Tucker||02/17/2019||$100.00||Praying!||The VanOverbekes||02/17/2019||$200.00||Sharon De Leon||02/17/2019||$25.00||Prayers for a cure!||Anonymous Friend||02/17/2019||$2,500.00||Rooting for you all the way, Lainey!||Andrea Kales||02/17/2019||$500.00||Love to all of you!!! Holding all of you in prayer and fighting, you got this!!||Annie Carruthers||02/17/2019||$100.00||Thomas Matuska||02/16/2019||$100.00||Hope for Lainey||Uncle Donny Matuska||02/16/2019||$200.00||And Aunt Alycia||Lori Lewis||02/16/2019||$50.00||Hope for Lainey||Alana Suomela||02/16/2019||$100.00||Hope, prayers, and research for Baby Lainey.||Rich & Nancy Benson||02/16/2019||$100.00||Sending our love, hope and prayers for sweet Lainey and the entire Matuska family.||Stacy Falteisek||02/15/2019||$50.00||Sending lots of hope and prayers for a cure!!||Anonymous Friend||02/15/2019||$1,000.00||Praying for Lainey and all the other kids patiently waiting for this research!||Ashley Olt||02/14/2019||$50.00||Sending hope & prayers your way!||Jay Picconatto||02/14/2019||$100.00||Thoughts and prayers to the whole Matuska family.||Anonymous Friend||02/14/2019||$500.00||Sarah Taylor||02/14/2019||$200.00||Lots of love for Lainey!||Deena Koenig||02/14/2019||$25.00||Anonymous Friend||02/14/2019||$5,000.00||For our sweet Lainey- fight hard baby girl! We will be fighting alongside of you!||Rogan Saal||02/14/2019||$100.00||For your sweet little girl and family. Stay strong!||Anonymous Friend||02/14/2019||$50.00||Praying for Lainey and your family!!!||Paula Rabaey||02/13/2019||$100.00||Blessings and hugs to all! Lainey will be in our prayers!||Katie Deutsch||02/13/2019||$300.00||For Lainey and for all. We love you.||Sarah Turley||02/13/2019||$50.00||For brave little girl and her family. Blessings on your journey.||Vicki Holtan||02/13/2019||$100.00||I believe in the promising research that is going on with the AAV project! I will pray for the amazing individuals and groups who are using their time and gifts to find a cure!||The Brum Family||02/13/2019||$50.00||Praying for sweet Lainey and her family.||Steph Toutant||02/13/2019||$100.00||Praying for you guys! -PJ & Steph Toutant||Lori and Vince Mohs||02/13/2019||$100.00||For Baby Lainey||Jen Corrigan||02/13/2019||$50.00||Sarah Martin||02/13/2019||$100.00||Lifting up sweet Lainey and family! She is one loved girlie!||Natalie Richards||02/13/2019||$20.00||Thank you for sharing your story. We will be praying for a cure||Anonymous Friend||02/12/2019||$50.00||Michelle Luetkemeyer||02/12/2019||$50.00||Love for Lainey||Heather Lucia||02/12/2019||$100.00||Cindy Egeness||02/12/2019||$50.00||Paula Gajewski Mickelson||02/12/2019||$50.00||Sam & Nick Erickson||02/12/2019||$50.00||Martha Phillips||02/12/2019||$50.00||The Bergman Family||02/12/2019||$5,000.00||Hope and prayers!||Anonymous Friend||02/12/2019||$100.00||Love to your family||Kim Sands||02/12/2019||$50.00||Praying for Little Lainey||Katie Doerer||02/12/2019||$100.00||Denise Inmon||02/12/2019||$100.00||Lots of love and prayers for the entire Matuska family!||Kelly Sykes||02/12/2019||$50.00||Big hope for baby Lainey||Kristin Chalberg||02/12/2019||$50.00||LH Gildensoph||02/12/2019||$50.00||Sending love and hugs||Mike & Sarah Maddox||02/12/2019||$50.00||Dawn Erickson||02/12/2019||$100.00||All our love to your family! #laineystrong||Kevin Stickney||02/12/2019||$300.00||Hope for Lainey!||Kari Rhode||02/12/2019||$100.00||Nate Sis||02/12/2019||$250.00||Adam Eckhardt||02/12/2019||$100.00||Praying for Lainey!||Anonymous Friend||02/11/2019||$50.00||Katie & Steve Gunville||02/11/2019||$30.00||Praying for you!||Mary Hearst||02/11/2019||$200.00||Our love to you all.||Jenna Iaizzo||02/11/2019||$300.00||For Lainey!||Mike & Manuela Benson||02/11/2019||$50.00||Praying for you❤️||Emma Wick||02/11/2019||$20.00||Anonymous Friend||02/11/2019||$25.00||Lindsay Howard||02/11/2019||$50.00||Peter Lee||02/11/2019||$100.00||Go Lainey!!!||Mike Klaas||02/11/2019||$50.00||Brent Thiesen||02/11/2019||$30.00||Sarah Lenton||02/11/2019||$50.00||Peter Schreiber||02/11/2019||$50.00||Mike DiAngelis||02/11/2019||$100.00||Rachel Evans||02/11/2019||$50.00||Charley O'Neill||02/11/2019||$100.00||Kathleen Matuska||02/11/2019||$100.00||Tommy Bennett||02/11/2019||$25.00||Meg and Eva Meierhoff||02/11/2019||$100.00||Lee Zehnder||02/11/2019||$25.00||Lainey you got this!! Love, Zehnders||Meghan Riley||02/11/2019||$100.00||Anonymous Friend||02/11/2019||$100.00||Anonymous Friend||02/11/2019||$100.00||Cecilia Konchar Farr||02/11/2019||$25.00||The Langs||02/11/2019||$250.00||We love you all!!!!!||Lainey Matuska||02/11/2019||$50.00||Anuja Deshpande||02/11/2019||$50.00||Christy Ressler||02/11/2019||$50.00||Bob&Betty Smith||02/11/2019||$50.00||Prayers sent for Lainey and the entire family||Anna and Toby Silverman||02/11/2019||$50.00||For sweet angel Lainey and her fight!||Abbey Sjogren||02/11/2019||$100.00||Praying for you sweet girl.||Robyn Boche||02/11/2019||$100.00||Sending love to you all!||Quita Oleson||02/11/2019||$150.00||Shannon Quealy Dye||02/11/2019||$100.00||Sending love||Lauren Byrd||02/11/2019||$50.00||Hope!||Clare O'Brien||02/11/2019||$75.00||Melissa Preusser||02/11/2019||$50.00||Prayers for Laniey and her family.||Laura Dourgarian||02/11/2019||$100.00||Anonymous Friend||02/11/2019||$100.00||There's always money in the banana stand||Ashley Schafer||02/11/2019||$100.00||Brittan Leiser||02/11/2019||$50.00||Thinking of you, Stacie! You and your adorable family are in my thoughts and prayers! Here’s hoping little Lainey can participate in future “Fall baking days” with you when she’s older :)||Whit & Terri||02/11/2019||$50.00||Love & Hope :)||Kevin Greer||02/11/2019||$100.00||Anonymous Friend||02/11/2019||$100.00||Tieg & Bri Herman||02/11/2019||$100.00||Kelsey Graf||02/10/2019||$300.00||For our sweet superhero! Xoxo The Grafs||Katie Rogstad||02/10/2019||$50.00||For baby Lainey ❤️||Ryan, Andrea, Bauer Beduhn||02/10/2019||$500.00||Let’s do this!!!!!!!! We love you!!!||Adam, Kayla, and Madeline Butler||02/10/2019||$100.00||We love you, sweet girl!||Kristin Moran||02/10/2019||$100.00||Praying for you guys every step of the way! Love, Andrew and Kristin Moran||Megan Jorgensen||02/10/2019||$100.00||We love you Lainey! Let’s find a cure! Love from the Jorgensens||The Novaks||02/10/2019||$75.00||For Lainey ❤️||Allison, Bob, Cameron Ertel||02/10/2019||$100.00||David Weller||02/10/2019||$500.00||It may have been a long time sence we've seen each other but we will always be friends.||The Zittlows||02/10/2019||$300.00||We love you sweet Lainey girl!! ❤️||Lydia Turnbull||02/10/2019||$250.00||Thinking of Lainey and you all||Shannon & Ron Cooper||02/10/2019||$300.00||We love you sweet girl!||Brooke Valenta||02/10/2019||$300.00||We Love you sweetest Lainey! The Valenta’s!||Bryan & Liz Bauck||02/10/2019||$30.00||Praying for you Lainey❤️||Bruce & Lynette Butler||02/10/2019||$100.00||Nick and Katie Leiting||02/10/2019||$50.00||Stephanie Benson||02/10/2019||$25.00||Donating on behalf of Jamie Furey and family.||Nicole, Brendan and Theo Buster||02/10/2019||$50.00||Thinking of you all!||Michelle Mccambridge||02/10/2019||$200.00||HOPE||Tom Parker||02/10/2019||$100.00||Sonja Hall||02/10/2019||$100.00||Sending love!||Kasey Dolejsi||02/10/2019||$30.00||For Lainey girl||Nick, Abbey & Elin Serati||02/10/2019||$150.00||For one brave little girl. Love you guys!||David Naab||02/04/2019||$100.00|