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The SavvyCast


Jan 9, 2020

In this episode, 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 young marrieds at 24 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.

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.

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.

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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