Ep 19: What Would You Do If Your Child Got A Rare Disease?

Episode 19 February 25, 2021 01:00:00
Ep 19: What Would You Do If Your Child Got A Rare Disease?
My Kids Think I'm Cool, BUT...
Ep 19: What Would You Do If Your Child Got A Rare Disease?

Feb 25 2021 | 01:00:00

/

Hosted By

Jacklyn Beck Jacklyn Beck

Show Notes

This episode is all about helping this momma get through a very difficult time in her and her family's life right now. 

This whole hour will be focused on Kathure’s family and her daughter, little Beautiful Ayah. Last November, Ayah got diagnosed with SMA which stands for Spinal Muscular Atrophy. SMA is a very rare disease and 1 out 10.000 children get diagnosed with this disease every year. It is so rare that Denmark has not approved the treatment for it since they only get 2 cases every year. Kathure has to go outside Denmark to get the treatment for a gene replacement therapy called Zolgensma, which will cost them 2million USD out of pocket. 

As a parent and especially an international parent, I wouldn’t even know how I would handle this kind of news. Kathura is a strong woman and she is raising money to save her daughter's life. I want to do my part and help spread the news about SMA and have my voice be part of the cause and help Ayah have a normal life. Let me introduce you all to Kathure Mithika, an international mom from Kenya.

Other Episodes

Episode 16

December 16, 2020 00:22:23
Episode Cover

Day 16: Christmas in Uruguay with Laura Marti

Welcome to Day 16 of my Holiday Special of My Kids Think I'm Cool, But Podcast. On this Special - I will be talking...

Listen

Episode 13

January 14, 2021 01:00:00
Episode Cover

Ep 13: The Stress Of Being An International Parent

In today’s episode we are going to talk about how stressing being an international parent can be. We try to speak the language, adapt...

Listen

Episode 18

February 18, 2021 01:00:00
Episode Cover

Ep 18: From Making Danes Laugh To Changing Diapers In Denmark

This episode we will be talking to a dad who made his way into Denmark and is famous  for making people laugh with his...

Listen