Our family is one of the most joyful, healthy and well-adjusted families I know. My husband, son, and their kids are all healthy, well-adjusted, and loving people. It is truly a joy and privilege to be a part of their lives.
I am fortunate enough to have been able to see my own family grow and develop in front of me. My son, Cameron, started having seizures at just four months old. By the time he was a toddler, he was having constant seizures that could last for several hours at a time. It was hard on me and my wife, and I was always concerned about them. My son has only been diagnosed with epilepsy a few times, but it’s still very rare in our family.
It is also important that parents know that seizures can be managed and even prevented. It can be incredibly debilitating for many children and can greatly impact a child’s ability to learn and develop. It may not have been so for Cameron, but many other children with epilepsy have had it managed, and many more have had it preventable. The good news is that many types of epilepsy also respond very well to medications.
It’s important to keep in mind that while seizures are highly debilitating, they are not life or death. They are important, but are not life-threatening. That’s why it’s important to have a plan to prevent the seizures from happening. If you’ve got a loved one with a rare neurological disorder, there are many options for treatment and management.
For example, some of the major types of epilepsy, such as Dravet’s Syndrome, are so rare that there is no cure. They can be prevented in children by keeping them under natural conditions, and then by keeping them off medication in adulthood. An example of a condition in rare that might have a preventative option is Lennox-Gastaut Syndrome, which is what many of my family members and friends have.
For Lennox-Gastaut Syndrome, there are two types. The first type is known as Wilson’s Disease or the “crippling type.” This is a genetic disorder that is caused by the mutation of a genetic gene on the X chromosome. The mutation is an absence of a single normal copy of the gene that normally creates the protein called LGN. This causes a buildup of LGN protein in a part of the brain called the ventral part of the brainstem.
The second type (also known as the milder form) is found in 2 out of every 3 million people. It’s caused by the mutation of a different gene that is located on the Y chromosome. This mutation causes a buildup of a different protein called YAP that is located in the ventral part of the brainstem.
These are the two types of mutations. The milder mutation is caused by a gene located on the Y chromosome which causes a buildup of a different protein called YAP that is located in the ventral part of the brainstem. The second type is caused by a gene located on the X chromosome which causes a buildup of a different protein called LGN that is located in the ventral part of the brainstem.
A rare form of cancer, called medulloblastoma, is now known to be caused by a rare mutation on the X chromosome. The medulloblastoma is also called a “hockey stick” tumor because it creates a “hockey stick” of malignant tumor cells. Medulloblastoma is usually incurable. As a result of this rare mutation, medulloblastoma occurs mainly in children.
Children are affected the most, but adults can be affected too, and the medulloblastoma is the most common type of brain cancer in adults. Medulloblastomas are usually slow-growing tumors that are present in the brain for years, but can grow at a very slow rate.
