The Unacceptable Reality

An honest look into life with Type 1 Diabetes for families in Africa with the founder of SNF, Vivian Nabeta.

By: rē•spin staff
The Unacceptable Reality

Imagine this: surrendering your child to an orphanage in order for them to receive better care or your child prematurely dying due to their type 1 diabetes (T1D). The choice to leave a child in the arms of a stranger in order for them to have a chance at life is not a choice anyone should have to make. This is the reality for many families in Africa. This hard reality combined with Vivian’s personal experience of losing her sister to type 1 diabetes, inspired the creation of The Sonia Nabeta Foundation.

In Africa, children and families afflicted with type 1 diabetes face an inordinate battle. The quest for treatment, community, acceptance, understanding, and financial support are oftentimes insurmountable. 

 

“It became very clear that there was a reality, on the ground in Africa, that no one was talking about that is absolutely unacceptable for a condition that could have good outcomes if only the proper infrastructure was in place”

– Vivian Nabeta

 

 

The stories of these children and families felt like a punch to the gut, and I am just merely listening to them aloud. I cannot begin to fathom living even a day in the life of these families’ difficult realities. Realities where “parents have to choose between school or insulin. And some parents too, don’t believe their child is going to live long because of their T1D – so why invest in their education?”. 

I asked Vivan to go deep with me, to talk with me about the gut-wrenching truth about the potential lives of these children if it were not for foundations such as SNF. I asked her to talk with me about what no one else is talking about – the unacceptable reality. 

“The burden of type 1 diabetes is impossible to carry for someone if they don’t even have food to eat” – Vivian Nabeta

Tell me more about some of the children (warriors) that SNF supports: 

Vivian: SNF focuses on children from low-income backgrounds, folks who do not have. For example, Bojo, born in war-torn South Sudan, was diagnosed with T1D in 2016, was born to a paraplegic and forced to flee South Sudan for a refugee camp in Northern Uganda. His parents chose to send him to an orphanage not because they didn’t love him, but because they believed he had the best chance at life there. So, for Bojo, we assigned a fellow type one warrior to be his mentor that checks on him every month, ensures that he is receiving his medical supplies and goes to the clinic for monitoring. 

Or Fauzia, an 8-year-old girl who was diagnosed in 2017, born in Northern Ghana to a polio-afflicted father who is a cobbler and a petty trader mother who earns just $2 a day. Basically, type 1 diabetes was killing her, with hypoglycemic attacks twice a day. The cost of her condition forced the family into homelessness and they too considered sending her to an orphanage. For Fauzia, SNF paid for her housing and healthcare for 3 years. 

Our programs are designed to address these social determinants of health that are the difference between life and death!

Tell me more about the programs you have on the ground in Africa: 

Vivian: The flagship program that SNF started with is Project Tuyinza, Tuyinza is a local word in Uganda that means “we can”. This program aims to develop knowledgeable, empowered, and educated warriors. In this program, we hold camps that host children with type 1 diabetes together for 4 days of learning, community building, supply sourcing, and building friendships among others with their condition in order to further offer them a sense of hope. This program also has a community outreach portion, where before  #covid – we would travel to schools and provide education. 

Our most recent program was inspired by the pandemic, this program is Boda-boda. In Uganda, a boda boda is a motorcycle taxi. So, when the lockdown order went into place, we partnered with the boda boda’s (who were still able to travel during this time for cargo deliveries) which enabled us to deliver supplies directly to the child’s home. Beyond the pandemic, we will be scaling up this program to continue home delivery services to further reduce the limited access to diabetic supplies. Even before the pandemic, children would travel up to 5.5 hours just to get to the clinic, largely making the journey on foot.

Other projects include Project Mishra which provides education scholarships because the cognitive, numeracy, and literacy skills are imperative for a condition that mandates these skills to determine insulin dosages. Project Mishra will be scaled up into a full education and medical campus to serve more warriors and create a path for gainful and productive lives and above all good health outcomes. 

Tell me more about what the children SNF supports lives might look like if it were not for the support your foundation provides – 

Vivian: Premature deaths or premature complications. 

For example, we met this girl – Editor, in 2019. She was 20 years old at the time, had been diagnosed ten years prior, and came to one of our camps in Uganda for she had T1D. First of all, she looked as though she was 10 years old herself for the body hadn’t fully developed which is a common complication of T1D due to poor glycemic control. Second of all, she had difficulty walking and early retinopathy had set in. That is what it looks like when there is nobody to provide the proper care for T1D and when families are outweighed by the burden on the condition. 

We have lost a lot of warriors prematurely. THAT is the reality for these children and why your support is ever more important. 

Tell me more about how we can support SNF. 

Vivian: Well, first and foremost let’s talk about The Wellness Warriorthon. This virtual event is assisting us in further shining a light on the importance of this cause by allowing us access to a platform that will continue to grow our community and support. Second, direct donations via our website and grant funding allow us to continue this work. In kind donations especially syringes are also welcome. We don’t have the infrastructure to viably transport insulin. Lastly, purchasing merchandise from our shop where all proceeds support the Warriors is a great opportunity to support us financially and further the message each time the merchandise is worn.  We are also building out our volunteer program so please keep an eye out on our website. 

The heartbreaking reality is that children in Africa are losing their lives prematurely due to a perfectly treatable condition and the angel of support in these children’s lives is The Sonia Nabeta Foundation. This foundation provides education, supplies, and a helping hand that allows these children to extend their lives and knowledge beyond what anyone in Africa (including sometimes their own parents) could ever imagine. 

Join us November 14, 2020 for the first virtual Wellness Warriorthon to further support The Sonia Nabeta Foundation. Get informed. Make A difference. 

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