Everybody with symptoms of ALD/AMN should be receiving Disability Living Allowance at the appropriate rate – if you have an asymptomatic boy on steroid replacement you are entitled to the lower care rate.
All carers of a family member with symptomatic ALD/AMN should be receiving Carer’s Allowance.
There are various grants available for people with disabilities. For major adaptations to your home your local council should assist with council accommodation. For those in housing association properties the landlord should help but is only morally obligated. If they will not help you can approach the Home Improvement Agency who also provide grants for privately owned properties. For small items of equipment not provided by the community you can apply to various charities for funds. Your social worker or occupational therapist should be able to provide you with a list. The Family Fund Trust are a good source and can also provide pieces of domestic equipment eg washing machines, fridges for families. http://www.familyfundtrust.org.uk/
For the most up to date information on benefits and grants Contact a Family are the best source of information http://www.cafamily.org.uk/.

Another invaluable source of information and help in funding things like holidays, equipment, financial help is a book called "The Guide to Grants for Individuals in Need". This can be found in the reference section of your local library and has a comprehensive listing of charities who give grants to individuals according to location, criteria and eligibility.