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Resources for Established Families

Eyes that See: Judson's Story of Hope in Suffering - By Christina Adelseck Levasheff

Without a Word: How a Boy's Unspoken Love Changed Everything by Jill Kelly 

The Neurology of Angels by Krista Tibbs

The Cure: How a Father Raised $100 Million--and Bucked the Medical Establishment--in a Quest to Save His Children by Geeta Anand


Loie’s Disease  (a children’s book to explain leukodystrophy) and Fixing Genes and Treating Disease  (a children’s book to  explain gene therapy) by Maria Kefalas and Pat Carr.

Living the Decision: A Pocket Guide to Cramming 72 years of living into 27 by Phillip Bennett and Jaime Richards -

Magnetic Resonance of Myelination and Myelin Disorders (MRI of Myelination & myelin disorders) by Marjo S. van der Knaap and Jaap Valk -

Children’s Books that Deal with Death, Loss and Grief -

Two Small Steps on Wet Sand - Anne-Dauphine Julliand

Proof of Heaven: A Neurosurgeon's Journey into the Afterlife -

The Worst Loss: How Families Heal from the Death of a Child- by Barbara D Rosof -

Caring for Children Who Have Severe Neurological Impairment: A Life with Grace (A Johns Hopkins Press Health Book)- by Julie M. Hauer -

The Doctor's Wife by Luis Jaramillo is his acclaimed and haunting memoir that chronicles the  life of his grandmother. Set in the 1960s, the family's idyllic existence of country club parties and liver and onions for dinner is disrupted by the diagnosis of the youngest child, John, with a mysterious illness they would eventually learn is leukodystrophy.  Jaramillo is the Director of the Writing Program at the New School in New York City.

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