Finding Funding for Our Girls

A few posts ago we talked about The National Organization of Rare Diseases (NORD) and discussed how this organization has some resources to help financially with the cost of living with a rare disease.

That got us thinking.

We thought, there must be more help out there. Help for not only rare disease but children with special needs in general so parents don't have to feel like they need to figure out how to grow a money tree!

We did some digging and we're glad we did because we found some amazing organizations and resources that are out there and are willing to help girls and families like ours. We hope that if you are in a tight position and wondering weather you can afford to give your Rett Girl the equipment that you know she needs or pay for the therapy that you know she will benefit from that you will check out these links.


AMS Vans : Provides a list of available grants and other funding available to help pay for a handicap van.


Ability Found: A wonderful non-profit organization whose goal is to empower all individuals with disabilities. Ability found helps to find medical and rehabilitation equipment free of charge to people with disabilities who can't afford it. They use a team approach to accomplish this, working with the client, the provider and the vendor.


The Prayer Child Foundation: The mission of the Prayer Child Foundation is to have a hand in answering the prayers of parents with special needs children and helping these children to have the joys of a normal childhood. This foundation may help fund the request of children ages 18 and under.


The Wheel to Walk Foundation: The Wheel to Walk Foundation is a non-profit organization dedicated to making a difference in the lives of children age 21 and younger with special needs. They help children who experience difficulty obtaining funding from their insurance companies.


United Health Care Children's Foundation Inc.: The UnitedHealthcare Children's Foundation is a 501(c)(3) non-profit charity dedicated to facilitating access to medical-related services that have the potential to significantly enhance either the clinical condition or the quality of life of the child and that are not fully covered by the available commercial health benefit plan. This “support” is in the form of a medical grant to be used for medical services not covered or not completely covered by commercial health benefit plans


The United Cerebral Palsy Organization: Click on this link to find your local chapter who may be able to direct you to local organizations that aid in funding the needs of special children.


Easter Seals: Much like the United Cerebral Palsy Organization, Easter Seals has local chapters that may be able to direct you to local organizations that may aid in funding the needs of special children.


The Home School Foundation's Special Needs Children's Fund: Enables financially struggling homeschooling families to provide a quality education for their children with special learning needs.


In addition to these resources you may want to contact your Rett Girl's local Children's Hospital. Many of them offer a list of local resources that may help you with the financial challenges we face. Here is a great link to Cincinnati Children's Hospital.

Or you may want to contact your local Kiwanis Club or Lions Club who have been known to rally around their local special needs kiddos helping them with everything from funding equipment or medical bills to assisting with funding their parents travel expenses to conferences regarding their child's medical condition.


If your Rett Girl is on a Children's Health Waiver or a type of Children's Medicaid you may also want to contact them or check out your state's website to see if there are any special needs funds or resources that you can take advantage of. Here is a link to Michigan's Children With Special Needs Fund.


We hope that you find these resources helpful! If you do find the assistance that your looking for all we ask is that you give us an update - we thrive on seeing our Rett Girls shine!