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Metachromatic Leukodystrophy (MLD) and Social Security Disability

When people think of Social Security Disability benefits, they often imagine hard-working individuals who have been faced with an unexpected disability that prevents them from carrying on their work activities. The fact of the matter is, many disability applicants are not just adults who are forced to leave the workforce. Some Social Security Disability applicants are actually children who have been diagnosed with severe and debilitating disabling conditions.

Another common misconception of Social Security Disability benefits is that it takes months or even years for a disability claim to be approved by the Social Security Administration. While this is true in many cases, some Social Security Disability applicants can actually receive an approval of their disability claim in just a matter of weeks. Children who have been diagnosed with late infantile metachromatic leukodystrophy are among the Social Security Disability applicants who can benefit from expedited claim processing.

Why are children with late infantile metachromatic leukodystrophy able to obtain Social Security Disability benefits in such a short period of time? Because this condition is one of the 88 disabilities that qualify a Social Security Disability claim for processing under the Compassionate Allowances guidelines. The Compassionate Allowances program was implemented in 2008, allowing some applicants to be awarded disability benefits in a matter of weeks rather than waiting months to complete the initial stage of the application process.

If your child has been diagnosed with late infantile metachromatic leukodystrophy, the following information will help you through the disability claim process and will shed light on how you can increase your chances of being awarded benefits more quickly under the Compassionate Allowances guidelines.

Late Infantile Metachromatic Leukodystrophy (MLD) - Condition and Symptoms

Late infantile metachromatic leukodystrophy, also known as MLD, is a condition caused by a deficiency of the arylsulfatase A enzyme, which results due to a gene mutation. Because an individual lacks this enzyme, a build-up of sulfatides develops in the tissues of the body. This results in the destruction of the myelin sheath that protects the body's central nervous system. As a result, the muscles of the body stop functioning properly.

Late infantile metachromatic leukodystrophy is inherited in an autosomal recessive pattern. If both parents are carriers, a child has a one-in-four chance of developing the disorder and a fifty percent chance of becoming a carrier but being unaffected by the disease itself. Twenty-five percent of children born to two parents who carry the mutated gene will not be affected by the condition, nor will they carry the genetic mutation.

When a patient suffers from late infantile metachromatic leukodystrophy, the symptoms can vary. Symptoms commonly associated with the condition include difficulty walking after the first year of life, muscle wasting, weakness, muscle rigidity, vision loss leading to blindness, convulsions, developmental delays, difficulty swallowing, dementia and paralysis. In some cases, a child who is diagnosed with this disorder will fall into a coma. If left untreated, most of the children who are diagnosed with late infantile MLD do not survive beyond five years of age.

Late infantile metachromatic leukodystrophy is a terminal illness and, as such, there is no cure or effective course of treatment. Instead, treatment will be focused on pain management and controlling other symptoms of the condition. Bone marrow transplants and stem cell transplants may be able to slow the progression of the disease, although the effectiveness of this treatment is still under debate.

Filing for Social Security Disability with Late Infantile Metachromatic Leukodystrophy (MLD)

If your child has been diagnosed with late infantile metachromatic leukodystrophy, your child may qualify for Social Security Disability benefits to help offset some of the financial stress caused by the condition. When applying for disability benefits for your child, make sure that you provide as much medical documentation as possible, including complete copies of your child's medical records. Lab results, treatment histories and written statements from your child's physicians can all help support your claim for Social Security Disability benefits.

It is important that you provide the Social Security Administration with as much information as possible when completing your child's Social Security Disability application. Fill out the application in its entirety and answer all questions with well-written, carefully thought-out answers. Questions should be answered in detail. Simple “yes” or “no” or one-word answers will likely result in a delay of your child's disability approval.

Your Child’s Late Infantile Metachromatic Leukodystrophy (MLD) Social Security Disability Case

Although late infantile metachromatic leukodystrophy is one of the 88 conditions that qualifies a claim for processing under the SSA's Compassionate Allowances guidelines, it is important that you understand this does not mean an automatic approval of your child's disability claim. While it does not happen often, the Social Security Administration has been known to deny claims based on Compassionate Allowances listings. This usually happens when an applicant files a claim that has not been completed properly or when an applicant does not include enough medical evidence with their Social Security Disability claim.

In order to increase your chances of a quick and hassle-free approval of your child's Social Security Disability application, you may want to consider retaining the services of a qualified Social Security attorney or advocate. This professional will work with you to ensure that your claim is completed properly and that all necessary medical evidence is provided to the Social Security Administration. Your advocate or attorney can also ensure that the adjudicator who reviews your file understands how your child's condition qualifies for processing under the SSA's Compassionate Allowances guidelines.