Ivy Goes South

This is Ivy, and she's two years old. She has a rare genetic condition called Paramyotonia Congenita SNEL  . This is a neuromuscular condition that affects her skeletal muscles. As a result, her muscles tighten and don’t release at the appropriate time. The Paramyotonia Congenita  SNEL affects her vocal cords, eyes, hands, feet and colon. Unfortunately, because it affects the vocal cords, it causes laryngospasms which are the involuntary closing of the vocal cords. These episodes can last from a few seconds to a few minutes. During a laryngospasm she is unable to breathe and oxygenate her blood.

 

These laryngospasms can be life-threatening. Medication is the best treatment for Paramyotonia Congenita SNEL. While the medicine is very effective, triggers can still cause laryngospasms and other muscle spasms. Triggers include cold temperatures, dry air, strong negative emotions, exercise and illness. Ivy has difficulty breathing when the temperature is below 20°F. Living in Minnesota is a problem with our frigid temperatures and dry air and let's not forget those significant temperature swings from warm to cold we get in the spring.

 

During a March trip to Disney and Atlanta to visit some friends, Ivy's parents, Dylan and Kalla, started noticing a drastic change in Ivy. Her body wasn’t cramping in the warm weather. No matter how warm (78°F all winter) Dylan and Kalla keep their house, the outside temperature plays a dramatic role in her body's cramping.

 

They also realized that even in the biggest crowds at Disney World, they were less stressed than they had been all winter because of the weather. Yes, there is a risk that Ivy will get sick from a crowd of people, but that's far less dangerous than an icy, cold winter. The winter lasts for several months out of the year in Minnesota.

 

The Roff family is moving to Atlanta for Ivy's physical health as well as for the well-being of their family. Dylan and Kalla want Ivy to have an average childhood, and it becomes evident that it would not be possible if they stayed in Minnesota. This move won’t make everything suddenly go away, but it will allow her to go outside most of the year and not be forced to stay inside their house for months at a time.

The purpose of this GoFundMe is to help Ivy and her family with the cost of moving and the medical bills that are quickly piling up. Thank you for reading their story.

 

If you are wondering what Ivy's condition looks like, search for ‘fainting goats’  on YouTube. They faint because they have Myotonia. Paramyotonia is a form of Myotonia.