Having a disabling condition can make it impossible to work, and parents of children with some disabling conditions often need disability benefits to continue to take care of their child. Alobar Holoprosencephaly is a severe condition, and most people who are born with it die before the end of childhood. There are, however, some people who live to adulthood, and they are usually unable to work because of it. The Social Security Administration has disability benefits for people with this condition, and loved ones of these individuals should know more about how they can obtain the benefits that their loved ones need.
What is Alobar Holoprosencephaly?
Alobar Holoprosencephaly is a rare but very serious condition that occurs during gestation development. It’s a brain anomaly in which the two hemispheres of the brain don’t fully separate, causing a variety of severe physical, neurological, and cognitive symptoms and often resulting in stillbirth or death within the first six months after birth. Early during gestational development, the two hemispheres completely fail to divide, resulting in a loss of formation of the middle structures of the face and brain. The brain cavities will also fuse together. Alobar Holoprosencephaly is one of four types of Holoprosencephaly, which include Semilobar Holoprosencephaly, Lobar Holoprosencephaly, and middle interhemispheric fusion. Each of these conditions will have slightly different symptoms and will look different on brain imaging tests.
The children who make it past the first six months of life often die at around 12 months, but some people do make it into childhood or even adulthood. The people who live into adulthood will have a variety of symptoms that will prevent them from working, often including mental retardation, seizures, and a wide variety of other potential diseases and disorders.
There’s a slightly increased risk of Alobar Holoprosencephaly in children born from mothers who have diabetes, but the majority of children who are born with this condition have no intrauterine exposure that could cause this condition.
Approximately one-third of children born with this condition will also have an abnormal chromosome. For other children, the condition is caused by a change in a particular gene, such as the ZIC2 gene, NODOL gene, CDON gene, or any one of several other genes.
Both males and females have this condition in equal proportions, and this condition occurs in people from a wide variety of ethnic backgrounds.
Symptoms of Alobar Holoprosencephaly
The majority of infants with Alobar Holoprosencephaly will have severe facial deformities. For instance, some will only have one eye or will have no eyes at all, but this is very rare. Otherwise, if they have two eyes, they’ll be spaced very closely together. Other infants will be born with a very small eye with a tubular-shaped nose. Some others will have eyes that are spaced very closely together and have a flattened nose and a cleft lip or bilateral cleft lip.
It’s also common for people born with this condition to have difficulties feeding and swallowing, and they might not grow normally and have an overall failure to thrive. General developmental delays and seizures are also common. Hydrocephalus, which is a buildup of brain fluid, is often something that people with this condition have, and some people will have pituitary and brain stem dysfunction.
Alobar Holoprosencephaly can also affect a range of other systems in the body. For instance, some people might have lowered blood sugar caused by defects in the pituitary glad. Other people might experience low levels of sodium or genital defects. Some other conditions that people might suffer from include mental retardation, spastic quadraparesis, which is a form of cerebral palsy that involves the loss of the use of the whole body, and athetoid movements, which are slow and writhing movements that occur continuously.
Treatment for Alobar Holoprosencephaly
Treatment for this disorder is often supportive because there’s no standard treatment. There isn’t a way to prevent fetuses from developing it while in the womb, and the exact symptoms can vary from one person with the condition to the next. The only way to potentially prevent someone from having this disorder is to screen family members for chromosome and gene defects because having a family member with this disorder puts a person at a great risk of having a child with the disorder, too.
One of the treatments that might be given to people who live beyond a few months is surgery to correct some types of facial deformities. For instance, some people might find it easier to eat if they had a cleft palate fixed.
It’s also worthwhile to consult with a neurologist if the child is having seizures so that the appropriate medication and other kinds of treatment can be administered. An endocrinologist should assess the child for pituitary abnormalities, and a developmental pediatrician can help direct other types of treatment. There are a variety of other disorders that might be separate from Alobar Holorosencephaly that they might have and might need treatment for.
Children with this condition need a team of doctors, therapists, and educators that can systematically create a plan of treatment for the child. Some of these professionals will include dentists, neurologists, special education teachers, pediatricians, surgeons, psychologists, and cognitive or behavioral therapists.
There are also clinical trials going on sometimes, so it can be worthwhile to check back frequently with a doctor to learn more about the types of treatments that could help some people with this condition.
Disability Benefits for Alobar Holoprosencephaly
Alobar Holoprosencephaly is a very serious condition, and many people with it need financial assistance so that they can continue to take care of their loved one with this condition. The Social Security Administration has a special program for people who will be given benefits based on their condition. This program is called the Compassionate Allowance Program, and Alobar Holoprosencephaly is on this list of conditions that are covered. People who qualify for this program will have their claims expedited and can begin receiving benefits in as little as a few weeks, which is significantly quicker than the several months to a couple of years that people whose conditions aren’t on this list have to wait.
Even though people who qualify for disability benefits with this condition are rarely denied, it’s still very important that the person applying on behalf of the applicant understands that they must fully fill out the information and give extensive evidence for the diagnosis of their condition. Stating that someone has been diagnosed with Alobar holoprosencephaly isn’t enough. Instead, applicants must also show a variety of tests, including lab results, medical records, and statements from doctors.
When filling out the information, it’s also important to note that the process of applying for a dependent child is different than applying for an adult who can’t work. While the process is slightly different, the documentation that’s necessary is almost completely the same.
How We Can Help
There are several ways in which the team at Osterhout Berger Disability Law can help you receive the benefit you deserve. We help individuals who need to…
- Apply for Social Security Benefits and want to ensure everything is done right the first time
- Appeal a denial of Social Security Disability Benefits
- Appeal an existing denial of Long Term Disability (LTD) Benefits
If you are facing one of these situations due to Alobar Holoprosencephaly, please do not hesitate in reaching out. Our team of experienced attorneys are here to help, and your consultation is free.