When a child is born with Aicardi-Goutières syndrome (AGS), it can be devastating for families. Instead of being concerned that your infant has diaper rash or cradle cap, you’re faced with worries about your child’s physical and intellectual development and, in some cases, whether or not they’ll live through childhood. Ensuring that your child receives the best possible medical treatment for this disease is critical. For parents of infants with AGS, the Social Security Administration (SSA) understands the seriousness of this diagnosis and has placed AGS on its list of conditions that qualify for expedited application processing through the agency's Compassionate Allowance Program.
What Is AGS?
AGS is a rare neurodevelopmental genetic disorder caused by a mutation of one of the following five genes: TREX1, RNASEH2A, RNASEH2B, RNASEH2C, and SAMHD1. Affecting newborn infants and characterized by encephalopathy (brain dysfunction) and resulting in severe mental and physical disability, AGS causes a number of symptoms that can range in severity from uncomfortable to disabling to fatal.
Approximately 20 percent of infants with AGS are diagnosed with the severe, early-onset form of the disease, which is often fatal in the first few months of life. Infants with early-onset AGS suffer from liver abnormalities such as an enlarged liver and spleen and elevated liver enzymes, as well as neurological deficits that mimic congenital viral infection, even though tests show that no actual viral infection is present.
Infants with later-onset AGS are usually diagnosed within weeks or months of birth. They experience a period of normal development followed by a progressive and rapid regression that includes moderate to severe developmental delay, a decline in head growth, and spasticity (weak or stiffened muscles).
Symptoms common to both forms of AGS include:
- Extreme irritability
- Inconsolable crying
- Loss of developmental skills
- Impaired vision
- Stiff joints
- Painful, itchy red skin lesions (known as chilblains) on the fingers, toes, and ears
- Profound intellectual disability
There is currently no cure for AGS; however, doctors can treat or manage some symptoms and provide supportive, palliative care.
Social Security Disability Benefits for AGS
Because AGS is included in the SSA's list of conditions qualifying for expedited application processing under the Compassionate Allowance Program, applying for Social Security (SS) Disability benefits for this condition is relatively straightforward. In addition to the completed application, applicants should submit documentation from their child's treating physician that includes:
- Diagnostic clinical history, physical findings, and laboratory studies
- Imaging studies such as MRI/CT brain scans that document brain abnormalities
- Molecular genetic studies
- Cerebrospinal fluid analysis
- EEG results (if the infant suffers from seizures)
Additionally, AGS meets the SSA's criteria for approval for several listings, including 110.08B, 111.02, 111.06, and 112.02.
We Can Help You Apply
When your infant is diagnosed with a potentially fatal condition like AGS, every second counts. Even with the promise of expedited processing from the Compassionate Allowance Program, there's no time to waste. Don't let valuable time go by while you wade through the SSA's lengthy and complex application. Let the experienced and knowledgeable disability attorneys at Keefe Disability Law guide you through the application process to ensure that your ill child receives approval for benefits in a timely fashion. We can provide the representation you need and deserve. Contact our office to schedule a free initial consultation. For additional information, request our free eBook, The Five Most Frequently Asked Questions About Social Security Disability.