Parents of sick children can attest to the difficulty of dealing with illness. When “rare” and “degenerative” are added to the disease diagnosis, there is no comparison to the fear, isolation and daily struggle of not only keeping your child alive but also advocating for them.
Azeza Kasham of Ann Arbor knows that struggle all too well. She has lived it every day since her son, Hiatham Breadiy, 17, was first diagnosed with Lafora Progressive Myoclonus Epilepsy, a rare form of epilepsy with currently no cure and no clear path for treatment. The condition is progressive and debilitating, leaving Hiatham wheelchair-bound and afflicted with many severe seizures everyday. Kasham describes it as a combination of dementia, Alzheimer’s, Parkinson’s, and severe epilepsy.
Advocacy for a rare disease
Because Kasham’s son’s particular condition is so rare, with only about 20 cases in the United States, information and support for the disease is limited.
“As a parent, I almost have to just start a path and clear a path for these children,” she said, “They have no advocacy.”
Kasham has learned what other parents in her situation have also learned: that she is her child’s first and best advocate.
From seeking more answers with a second opinion from the Cleveland Clinic, when her son was first diagnosed two years ago, to scouring the internet for anything about her son’s condition, Kasham has taken a difficult road to find information and to find support for a struggle that is 24/7 for her family.
Hope for a cure
Her exhaustive search for answers initially turned up very little, but, she said, there was one doctor’s name that kept popping up on the internet— Dr. Berge Minassian— who is involved in research on Lafora and a promising new treatment that Kasham hopes will be a cure. Minassian is a pediatric neurologist at University of Texas Southwestern Medical Center and specializes in epilepsy and neurodegenerative diseases.
The family traveled to the University of California, Los Angeles in March 2018 so that Hiatham could be seen by doctors involved in the clinical trial. Kasham said it is important for Hiatham to be seen periodically so that doctors can see the progression of his disease and appropriately stage it for the clinical trial, which may take place in December 2019.
She has Minassian’s phone number, which is especially important for questions, advice and to keep up-to-date on any developments in treatments.
She also discovered Chelsea’s Hope, an organization that raises funds for research, treatment, and a cure for those affected by Lafora; although, the organization does not offer any financial support for families.
Financial toll and search for support
Kasham said the financial and emotional burden of having a terminally ill child with a rare disease is crushing, especially considering the expense of travel for clinical trials and expensive experimental drugs and treatments insurance will not pay for. That leaves families trying to fundraise on their own.
“I can’t stop advocating for him, because his life depends on it,” she said. “I want people to see that his life is worth advocating for and that people should support a child that is trying his best just to hold on.”
Her family recently moved to a wheelchair accessible home with some help from the Ann Arbor Housing Commission. Chive Charities donated a wheelchair accessible van to the family last fall and a friend started a gofundme page to help the family with medical expenses. Hospice caregivers visit to help with some of Hiatham’s daily care needs. Kasham said she is grateful for the help received so far, but the family is still struggling under the weight of their situation.
For other parents who may be going through a similar struggle, Kasham said that it is important to continue to advocate for your child and to not be afraid to ask for help. She said that she hopes that someday she may be able to start a nonprofit organization for children with rare diseases because she knows, firsthand, what it feels like to be a parent in that situation.
Sources for Rare Disease Information
- National Institute of Health Genetic and Rare Disease (GARD)
rarediseases.info.nih.gov
Provides plain language web pages on 6,500 rare diseases for patients and families.
GARD also offers an individual inquiry service for more detailed information. - National Organization for Rare Disorders and the Genetic Alliance
rarediseases.org and geneticalliance.org
Offers disease information and patient support. - Chelsea’s Hope
chelseashope.org
Raises money to fund research for Lafora. - The Rare Epilepsy Network (REN) of the Epilepsy Foundation
epilepsy.com
Collects information about people with rare epilepsies to help understand the conditions and improve treatments.
Ann Arbor teen Hiatham Breadiy died unexpectedly October 22 after a long battle with Lafora Progressive Myoclonus Epilepsy, according to his mother, Azeza Kasham. Kasham and her family are devastated and heartbroken by the loss of Hiatham to this rare, devastating disease.
A GoFundMe page was established to help the family with medical costs and now is assisting with funeral costs www.gofundme.com/f/jessicanovakov
