Let’s Talk: Raising a Child With Lennox-Gastaut Syndrome

In this episode of The SavvyCast podcast,  Jonathan & Kristy McKinney talk about raising a child with Lennox-Gastaut Syndrome and how it has challenged and shaped their entire family.

Jonathan & Kristy Mckinney Share Their Story

Jonathan & Kristy McKinney were 25-year-old and in their second year of marriage when they became pregnant with their first child. They share the journey of infantile seizures which led to Lennox-Gastaut. When a doctor tells you that your child has a “catastrophic” condition and that it will be lifelong and incurable, what do you do? This is a snippet of their story. I also share a few photos of their precious family below.

Jonathan Kristy McKinney
Jonathan & Kristy McKinney

What is Lennox-Gastaut Syndrome

Lennox-Gastaut Syndrome is a severe condition marked by recurrent epileptic seizures that begin early in life. Most children with Lennox-Gastaut Syndrome have severe intellectual disability or learning problems which often worsen over time.  Most people with this condition require help with the usual activities of daily living.

Lennox-Gasteaux Syndrome
John Andrew “JA” McKinney

Raising a Child With Lennox-Gastaut Syndrome is Challenging

Parents with a disabled child face definite challenges. Jonathan and Kristy share a few that they have faced in raising their son with Lennox-Gastaut Syndrome.

  • Multiple hospital visits.
  • Extended stays in hospital.
  • Multiple brain procedures.
  • Multiple prescription drugs with high cost.
  • A need for medical equipment not covered by insurance.
Jonathan Kristy McKinney
Jonathan & Kristy with Hudson and Ruthie

Support From Others Is Life Changing

Jonathan and Kristy share a few of the many ways they and their family have been blessed by the help of others in their family, church, and community. They share how even at their lowest points, help came in some form~whether through family, church members, or a well-equipped school.

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