My son is dying a slow and heartbreaking death from Duchenne muscular dystrophy (DMD). As a mother, I face the unimaginable reality of watching him struggle daily, losing the ability to do things that most of us take for granted, such as walking and breathing comfortably. This cruel disease robs him, and hundreds of other children across the nation, of a normal childhood. Each year, families like mine endure immense emotional and financial strain as we helplessly watch our children succumb to this relentless disorder.

Under the current U.S. law, these families are denied immediate access to Social Security Disability Insurance (SSDI) and Medicare until the child affected by DMD turns 18 or even 21. Even then, the system imposes daunting five-month and 24-month waiting periods before benefits can be accessed. This is unjust and reflects a severe lack of understanding and empathy towards the critical needs of DMD patients who require continuous and immediate care to improve their quality of life.

Duchenne muscular dystrophy is the most common fatal genetic childhood disorder, and with every passing month, the condition of these children deteriorates. Early access to Supplemental Security Income (SSI) and Medicaid through the Division of Developmental Disabilities could be a game-changer, providing necessary support to manage the disease more effectively and allowing families to focus on care, not costs.

Implementing these benefits to activate upon diagnosis rather than enforcing age thresholds and waiting periods is crucial. This change could mean the difference between life and death for families battling DMD. Legislative action must be initiated to amend the laws and policies surrounding access to disability benefits, acknowledging the urgent needs of children with Duchenne muscular dystrophy right from the moment they are diagnosed.

Sign this petition to urge lawmakers to revise the eligibility criteria for SSI and Medicaid. Help ensure that no family has to wait while time runs out for their child. Together, we can advocate for a compassionate change that acknowledges the gravity of DMD and supports families when they need it the most.