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Education Links
IDEA (IDEIA) Regulations - the 2004 Federal regulations on education for disable children. This document is 300+ pages long but some have found that printing the cover page and pages 253-259 and then bringing them to you child's IEP shows that you are willing to use the law to call for accountability. The law is clear on your rights to participate in all decisions and how you may appeal decisions you do not like. See especially pages 23-31, 33!, 35, and 36.
Other Support & Resources
Project Linus - provide love, a sense of security, warmth and comfort to children through the gifts of new, homemade blankets and afghans, lovingly created by volunteer blanketeers. Several members of the MLD Family have reported very good things about Project Linus.
The Oley Foundation - focused on tube feeding support &information
Sammons-Preston - supplier of assisted living & disability products
CLiMB - Children Living with Metabolic Diseases and Contact-A-Family - a UK charity providing support and advice to parents whatever the medical condition of their child
Care of the Terminally Ill Child - Psychosocial Needs of the Dying Child
Wish Organizations
Make-a-Wish Foundation - International wish granting organization for children.
Starlight Children's Foundation - wish granting organization for children.
Dream Come True - wish granting organization for children.
Dream Foundation - wish granting organization for adults.
Grief Organizations
The Dougy Center - A grief support organization for children. Use the "Quick Link" to find similar local support organizations for children in your community.
Compassionate Friends - for adults that have lost a child. Many local chapters that meet regularly. Note that the reasons for loss are many in this organization - not just a terminal disease like MLD.
Google Search - a list of other grief support organizations - no experience or endorsements implied.
Also See:
Medical Links
Education Links
Compassion Links
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