Eva Layla is a precious 18-month old baby girl and is the youngest sibling to 5 brothers. She was born on March 30, 2019, and her parents were thrilled to finally have a little girl. Unfortunately, as Eva started to grow, her parents noticed that she was delayed in meeting some key developmental milestones. Then, in May of 2020, Eva had her first “episode” and started displaying stroke-like symptoms: half of her body seemed completely paralyzed, and she was unable to move her leg, arm, or head. After numerous sticks, pokes, and medical tests came back without result, Eva was sent home. Eventually though, on June 29, after many more outpatient tests were conducted, Eva was diagnosed with Alternating Hemiplegia of Childhood (AHC). AHC in an extremely rare neurological disease that affects 1 in 1 million children. It often presents itself in periodic episodes of paralysis that can vary in severity and length; sometimes they are mild and only last minutes, but other times they can be very severe and last for days. In addition to paralysis, AHC can cause nutrition deficits, behavioral difficulties, delayed development, impaired mobility, uncontrollable muscle movements, intellectual deficits, or even sudden death. Because AHC is so rare, there has been limited research conducted, and there is no cure to date. Since her diagnosis, Eva has lost her appetite and fallen off her growth curves; struggles to pull up and cruise furniture; and has regressed in many skills that she had once mastered.
If you know Eva and her family, then you know that they have been completely devastated by Eva’s diagnosis and are grief-stricken knowing the painful, difficult future that their daughter faces.
What do we do in light of such a devastating diagnosis? We PRAY. We HOPE. We GIVE. And we don’t stop, until there is a CURE for Eva Layla. Eva and her family will be fighting this fight for as long as it takes—and we will fight with them until this battle has been won. Eva’s fight is our fight, and we all will strive to be #EvaStrong.
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 |
Wendy Schuyler | 12/01/2020 | $77.55 | Martha Wieser | 10/26/2020 | $103.30 | Christina French | 10/07/2020 | $103.30 | Geoff and Amy Boone | 10/05/2020 | $51.80 | Philip Veitch | 10/04/2020 | $56.95 | Prayers for Eva and her family. | Melody Sharp | 10/04/2020 | $103.30 | Prayers lifted. Much love to all of you. Melody and Mike | Lyndze Thomas | 10/04/2020 | $20.91 | Love you guys! | Jim and Beverly Boone | 10/04/2020 | $50.00 | Sending our love and support. | Natalie Conca | 10/03/2020 | $.00 | Natalie Conca | 10/03/2020 | $51.80 | Jimmy Tigani | 10/03/2020 | $51.80 | Pantea and I are praying for Eva. Sending you Strength and Love. | Pezeshcan Family | 10/03/2020 | $100.00 | Sending our love! | Angela Dykes | 10/02/2020 | $.00 | Gretchen Tipps | 10/02/2020 | $.00 | Kelly Eiberger | 10/02/2020 | $.00 | Mary Thweatt | 10/02/2020 | $.00 | Danielle Brammer | 10/02/2020 | $.00 | Danielle Brammer | 10/02/2020 | $26.06 | Lauren Sims | 10/02/2020 | $206.28 | They ARE going to find a CURE for Eva Layla!!! | Kimberly Clark | 10/02/2020 | $20.91 | Angela Helmick | 10/02/2020 | $103.30 | Cure AHC!! | Eva Spencer | 10/02/2020 | $103.30 | We love you so much Eva & will do whatever it takes to help! | Angela Dykes | 10/02/2020 | $26.06 | Mary Thweatt | 10/02/2020 | $100.00 | Amber Johnson | 10/02/2020 | $77.55 | Love you all!!!! | Gretchen Tipps | 10/02/2020 | $51.80 | Kelly Eiberger | 10/02/2020 | $103.30 | Juliet Pezeshcan | 10/02/2020 | $20.91 | Juliet says wants to help in any way she can! Donating her saved birthday money to finding a cure for her baby cousin Eva! | Kirstie Perry | 10/02/2020 | $51.80 | Anonymous Friend | 10/02/2020 | $20.91 | Eva Spencer | S Sheth | 09/30/2020 | $26.06 |
Total | $1,708.95 |