Nadia and Natashia's daily struggle!
- By: Pat Van Schalkwyk
- Short URL: https://www.backabuddy.co.za/nadia-and-natashia
Meet Nadia, a 15-year-old teenager from Krugersdorp who was diagnosed with Kearns-Sayre Syndrome (KSS) at the age of two. Up until last year Nadia did her utmost to defeat the KSS syndrome and to live the life of a normal teenager.
Not only is the meaning of her name “Hope” but does she also spread the word of hope.
Up until the end of 2018 Nadia’s been addressing crowds all over South Africa, at no cost, sharing the message of God, love and hope. She has touched many hearts, not only in South Africa but also overseas.
Over the last 7 months, Nadia has not been well at all. After another 57 day in ICU, she is now recovering in a rehabilitation centre.
Up until a month ago we were not aware of any other KSS patients in South Africa. It was great excitement that we heard about Natashia.
Meet Natashia, she is a 24-year-old girl who was diagnosed with KSS at the age of 9. Natashia lives in Cape Town where she is looked after by her mother and granny when mom is at work.
These two girls bring so much joy to their family although they are fighting a daily battle against time.
Unfortunately, the knowledge, support and network for KSS in South Africa are non-existent and it has been a struggle for the two families to not only care for the girls but to get the medical attention their girls need.
After intensive research on KSS and many emails we made contact with various International organizations, clinics, support groups, medical researches, other patients and families. Most of these were from America.
We were also put into contact with the UMDF Foundation;
Their mission is to promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.
And this is where my plea for assistance comes in. The UMDF is holding a symposium for patients and families in Washington DC on 26 – 29 June 2019
Read more: https://www.umdf.org/symposium/
Please help us to get one of the two moms, Lize, Nadia’s mom to this symposium so that she not only can meet with the relevant doctors to discuss the two girl’s medical backgrounds, maybe even get them on the trial medication to extend their life’s, but also so that she can bring back valuable knowledge to South Africa whereby we can create KSS awareness.
There must be other children in South Africa with the same syndrome which are in desperate need for help!
Unfortunately, Brigitte, Natashia’s mom will not be able to make the trip as she is the one that cares for Natashia. I do however have one small request, a new mattress for Natashia to make life easier for her.
Assistance with ANY funding will be appreciated!!
I am hoping to raise the funds within two weeks
Funds raised will be used to cover:
Symposium in Washington DC - R 15,000 (50% of total cost)
1 x mattress & recliner chair - R 5,000
By raising these funds, it could be a lifesaver for these two girls!
- Jun 14, 2019 - R 205.64
- "Ons bid vir julle tweetjies en ook vir jul ouers wat so veg vir julle ????????" - CW
- Jun 13, 2019 - R 203.00
- "Julle is so inspirerend. In my gebede" - Loekie
- Jun 13, 2019 - R 1 028.20
- "Hoop vir Nadia" - Futcher's
- Jun 13, 2019 - R 514.10
- "Moenie ophou veg nie! Ons weet daar 'n oplossing vir julle gaan wees xx" - Tannie Pat
- Jun 13, 2019 - R 514.10
- "Ek bid dat daar vinnig 'n deurbraak sal kom wat hierdie pragtige 2 dogters sal kan genees." - Helene Viljoen
- Jun 13, 2019 - R 100.00
- "Baie sterkte julle tweetjies!" - Oumie Marthie
Nadia and Natashia KSS Cause
I am Nadia's aunt. Nadia was diagnosed with a rare syndrome. Through my research to help Nadia to get medical treatment I met Bridgette, Natashia's mom. Natashia is another patient living with the KSS syndrome
I am raising funds to get one of the mom's to America to a Symposium where she will be able to not only meet but also speak to the various doctors who can help these two girls.