Not only is purple my four-year-old daughter’s favorite color (although last week, I’m pretty sure she changed it to pink), but purple is also the color of Epilepsy Awareness. Purple Day is Sunday, March 26, and is an international effort to increase people’s knowledge and awareness surrounding epilepsy.

My son, Parker, has epilepsy, although he has been seizure-free since his brain surgery in 2017. He’s the reason I became a Chartered Special Needs Consultant® and why I’ve dedicated my career to helping families who have children with unique needs. I love helping families who so desperately need something – anything – taken off their plates. My goal is to take the financial burden off their shoulders so they can focus on what’s more important in life with the very little free time they have.

I’d like to share some interesting facts and statistics about epilepsy so I can do my small part in representing Purple Day by spreading knowledge and awareness of this debilitating disorder:

  • If you have two unprovoked seizures, or one unprovoked seizure with a high risk of having more in the future, you’re considered to be epileptic. Even if you only have two seizures and never have one again for the rest of your life, you’re still considered to be epileptic because you had the two.
  • If you’ve heard the rumor about swallowing your tongue during a seizure, this is actually physically impossible to do and is not true.
  • Remember Stay. Safe. Side. STAY with the person, and time the length of the seizure, as the paramedics and doctors will certainly ask. Keep them SAFE by turning them on their SIDE. Do not restrain someone having a seizure, and do not force something into their mouths. Call 911 and stay with them until they regain consciousness.
  • Seizures are not contagious.
  • Seizures can manifest themselves in many ways. Everyone has heard of the classic tonic-clonic (formerly “grand mal”) seizure. Don’t assume that it isn’t one just because it’s not a tonic-clonic. Parker’s seizures looked nothing like them and would only last about a second. In fact, there are focal seizures (also called auras), where you can barely tell the person is experiencing one.
  • At least 1,000,000 people in the U.S. alone have uncontrolled epilepsy.
  • Roughly 65 million people worldwide have epilepsy.
  • In about 50% of cases, the cause is unknown. Parker is included in that 50%.

The U.S. Department of Agriculture estimates the cost of raising a child from birth to 18 to be $233,610, or roughly $12,978 a year. In contrast, raising a child with special needs can cost an estimated $1 million or more over that same timeframe, or roughly $60,000 a year.

Clearly, the cost of raising a child with special needs can be daunting. With this level of expense, it’s easy to see why retirement might take a backseat to the care and needs of a child today. But a good financial plan can help you do both.

A financial advisor can help you find the necessary resources to help subsidize some of the significant annual costs involved in caring for a special-needs child. These could include grants, scholarships, tax breaks, educational assistance, and government benefits through Social Security or Medicaid. Your advisor can also connect you with other professionals, such as an attorney whose focus includes special-needs estate planning and trusts.

Parents with a special-needs child should not sacrifice their retirement plans; instead, they should consider setting goals and working with professionals early to accommodate their own needs as well as their child’s. This can help alleviate stress and foster good communication around how the couple can realistically achieve their ideal future.

If you have a child with special needs and would like assistance to create a plan that’s right for your family, Savant can help. In the meantime, please show your support and help spread epilepsy awareness by wearing purple on Purple Day, Sunday, March 26.

Author Jeremy S. Joseph Financial Advisor

Jeremy has been involved in the financial services industry since 2006. He earned a bachelor of arts degree in communication studies from the University of Kansas.

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