Caring for Krabbe Kids

Website created by the May family to provide layman information for families with severely ill children. Topics range from: Equipment lists, Medical Issues, Therapies, Information Resources (recommended books and websites), Some Financial Insights, Caring For Your Family, Witness (to Jesus Christ), and End of Life (and Funeral) Planning. Please note that all information is provided from parents perspective, and should not be construed as medical advice. Also, the website has not been recently updated.

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The Believing for Bryleigh Foundation

The mission of The Believing for Bryleigh Foundation is providing relief, support, and assistance to families affected by Metachromatic Leukodystrophy (MLD) and other Leukodystrophies and disabilities by helping to educate, create awareness and family support programs, funding research, and providing financial support.

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The Jackson Project

The mission of The Jackson Project is raise awareness about Krabbe Disease and other Leukodystrophies, provide support for families, and advocate for expanded newborn screening. The Jackson Project is a 501(c)(3) public charity formed in honor of Jackson Wallace, affectionately known as J-Bird, who had Krabbe Disease.

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Olivia Kay Foundation

Providing information about living with severe, multiple impairments, connecting you with appropriate resources for obtaining medical equipment or suitable transportation, Equipment exchanges, Support Groups and Networks, Gas cards for getting to medical appointments, Financial gifts for respite care/nursing care so parents can get a “break,” or funding, Olivia Gift Baskets for families admitted to PICUs, Home improvements for wheelchair accessibility.

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The M.O.R.G.A.N. Project

Offers an extensive online searchable database of disability resources and grant/wish funders as well as other organization resources and searchable resources by state. We also maintain a Pediatric Equipment Exchange Program to offer parents an option to donate no longer used equipment and medical supplies and then donate them in turn to a family with a need, all at no cost to either the donor or recipient.

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Aidan Jack Seeger Foundation

Aidan’s Gifts helps families who face extreme financial stress attributed to the costs associated with caring for a child with ALD or another Leukodystrophy.

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  • Angel Flight: Provide free medical transportation http://www.angelflight.com/
  • First Hand Foundationhttps://www.firsthandfoundation.org.  Funder provides grants up to $5000 for anything not covered by insurance whether DME, medical treatments, or program related.
  • Fred’s Footsteps – Local to Philadelphia suburbs and CHOP. Provide direct financial assistance for non-medical expenses, such as household bills, to make up for gaps in income as well as one-time extraordinary expenses, like medical equipment or home modifications. https://fredsfootsteps.org/events/
  • Grotto Foundationhttps://www.hfgrotto.org.  Provides dental care to those with special needs nationwide.
  • Hope Kidswww.hopekids.org HopeKids provides ongoing events, activities and a powerful, unique support community for families who have a child with cancer or some other life-­threatening medical condition. We surround these remarkable children and their families with the message that hope can be a powerful medicine.
  • Magic Wheelchair – Magic Wheelchair is a nonprofit organization that builds epic costumes for kiddos in wheelchairs — at no cost to families. https://www.magicwheelchair.org/
  • Make a Wish Foundation – Grants wishes to children diagnosed with a critical illness. https://wish.org/
  • Medical Supply/Exchange Programs
  • Sunshine Foundation – Sunshine Foundation’s sole purpose is to answer the dreams of chronically ill, seriously ill, physically challenged and abused children ages three to eighteen, whose families cannot fulfill their requests due to financial strain that the child’s illness may cause https://www.sunshinefoundation.org/
  • The Bone Marrow & Cancer Foundation (BMCF): Offers financial assistance and free support services to cancer and transplant patients and their families http://bonemarrow.org/
    • The Brooks Coleman White Foundation: Financial assistance with purchasing medical equipment, clinical services or related needs http://www.bcwfoundation.org/
    • United Healthcare Foundationhttps://www.uhccf.org.  They provide up to $5000 for medical care denied by traditional insurance.
    • Believe in Tomorrow Children’s Foundation:  (Regional, Maryland – John Hopkins Children’s Center). Free accommodations when you are traveling from afar. https://believeintomorrow.org
    • My Gym Foundation: Requests, limited to gifts of $500 or less, may include but are not limited to rehabilitative therapy, assistive devices, medical equipment, and sensory items. https://www.mygymfoundation.org/apply-for-a-gift/
    • Aubrey Rose Foundation – Provide help with medical expenses for families with ill children. https://aubreyrose.org/about/
    • First Hand Foundation – Provide funding for individual children with health-related needs when insurance and other financial resources have been exhausted. https://www.firsthandfoundation.org/
    • Giving Angels Foundation – Provides lower income families with grants for life-changing equipment, medical supplies, essential family bills, specialized camps, and therapeutic toys.https://givingangelsfoundation.org/
    • Hannah and Friends – (Regional – Indiana, the Michiana area, New York, Rhode Island, and Florida.) Provide quality of life grants for families with individuals with developmental disabilities. https://www.hannahandfriends.org/
    • The Maggie Welby Foundation – Provide grants to help with bills, athletic opportunities, medical needs, or an opportunity that a child would not otherwise have. http://maggiewelby.org/index.html