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 20

March 11, 2021 01:00:00
Episode Cover

Ep 20: Moving and Raising Kids In Denmark

I am interviewing a mom who is a Therapist, an expat mother, and moved to Denmark with her family 5 years ago. She helps...

Listen

Episode 31

August 17, 2021 00:52:30
Episode Cover

EP 31: Creating an Educational Space and Support System for Expats While Raising An International Family

Today, on my episode I have Rashmi Jethani. I am so happy she will be talking about her life here in Denmark as an...

Listen

Episode 6

July 14, 2022 01:02:13
Episode Cover

Making Denmark Smile One Cocktail At A Time with An Kragh

“We don’t need to please everybody and prove ourselves to them. Just do the work and let your work and the results speak for...

Listen