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Rare Disease Mom Seeks to Help Caregivers Prevent Medical Trauma in Special Needs Children
A lawyer turned caregiver to a child with a rare disease has authored an ebook to share strategies for preventing medical trauma in special needs children. Melissa Hogan's son has Hunter Syndrome, but a lot of joy despite a medically involved life.
Author Melissa J. Hogan addresses that issue in her new ebook Calmer: Medical Events with Cognitively Impaired Children ($4.99 on Smashwords and Amazon Kindle, available soon on iTunes and other digital venues).
Calmer: Medical Events with Cognitively Impaired Children is based on the author's experience with her five-year old son Case who suffers from a rare and degenerative disease called Hunter Syndrome (also known as Mucopolysaccharidosis II). His condition normally causes the loss of physical and mental abilities over time with a lifespan in the teens. Case sees ten specialists and four therapists, has a weekly infusion, participates in a clinical trial, and also has other regular medical procedures, but he remains a laughing, singing child who pretends to be a nurse to his stuffed animals, relatively untraumatized by the constant medical interventions.
This short book offers a toolbox of important strategies, described in parent, not psychologist, terms to help prevent and reduce medical trauma in that most vulnerable of populations, children with special needs.
The author has had occasion to refine these strategies over the course of the last three years since her son's diagnosis and especially over the last 16 months as he has participated in a clinical trial. The groundbreaking clinical trial is being performed at North Carolina Children's Hospital in Chapel Hill, where the enzyme Case's body is missing is being infused into his spinal fluid and brain. Case's family has seen extraordinary results including the reacquisition of some skills that Case had previously lost.
Melissa J. Hogan is sought as a speaker about rare disease as well as social media as it relates to rare disease. She will be speaking at next week's World Orphan Drug Congress in Washington, D.C. about the intersection of rare disease and social media and as a patient testimony speaker on behalf of her son. She is a lawyer and strategic consultant by training and experience, but her greatest joy is in operating a website about Hunter Syndrome, special needs, special education, and her son Case's participation in a clinical trial (www.savingcase.com)
To purchase the book, visit
- Smashwords: http://www.smashwords.com/
- Amazon: http://www.amazon.com/
- iTunes and other digital venues: forthcoming