The Premier Family Resource for Metachromatic Leukodystrophy Information & Support

Care of Your MLD Family Member

this topic is under development - most of these links will take you off-site and some may cease to exist as others change their web sites. Please suggest new links you would like to see here.

SSI - Supplemental Security Income (for US residents)

SSI is a program of the Social Security Administration (SSA) that makes payments to disabled persons (including children) who have limited income and resources. Many states pay a supplemental benefit to persons in addition to their Federal benefits. (SSDI is a separate program based on funds you have contributed to Social Security over the years).

Late infantile MLD is part of the SSI Compassionate Allowances (CAL) initiative. This initiative is a way to expedite the processing of SSDI and SSI disability claims for applicants whose medical conditions are so severe that their conditions obviously meet Social Security's definition of disability. It is not a separate program from SSA's two disability programs, SSDI and SSI.

More information on SSI here and on the CAL here. Be sure to read the FAQ here, too.

A 3rd party summary of the CAL for MLD is here.

Care of your MLD family member

• Enteral Feeding

G & J Tubes

• PEG - percutaneous endoscopic gastrostomy tube
• PEJ - percutaneous endoscopic jejunostomy tube
• placement
• Picture of J-Tube
• Information - Management of enteral nutrition
• G-Tube Procedure
• G-Tube - excellent drawing
• G-Tube Care Notes - from a MLD mom
• G-Tube Tips
• G-tube Care
• "Mickey" PEG no dangling tube - just a simple button

Reflux & Fundoplication

• What is it?
• Fundoplication
• Fundoplication surgery - very technical
• Links & Support

Drugs and Metachromatic Leukodystrophy

• Drug - what pill is this?

Physical Therapy, Scoliosis, etc.

• additional topics and organization underway