Brothers Raise $1500 for Newborn Twins with NEC

 

If you’ve been overwhelmed by the news and are looking for a feel-good story, you’ve come to the right place! Five years ago, when they were just 5 years old, brothers Cooper and Koby Smith ran their first lemonade stand. This marked the start of their activism and advocacy. Since that day, the brothers have donated the funds from each lemonade stand to someone in need. Recently, they raised $1,500 for Archie and William Burden, identical twins born with necrotizing enterocolitis (NEC). Check out their story in PA News.

Running the Lemonade Stand

First, the Smith boys donated money to their neighbor down the street to help with his medical funds. After some heart issues, the neighbor had found himself in the ICU. Next, they raised money for their teacher’s husband, who has cancer.

Most recently, the 10-year-olds relied on the community to help raise money for the Burden twins. At $1 a glass, the boys sold 800 cups over a 2 hour period. Additionally, the boys also raised $700 in online donations. Says Koby:

“We like helping our community and [felt] happy that we made all the money. [We are] excited to hand it over to the Burden twins’ mom and dad.”

The Burden Twins

When Haley and Hayden Burden first found out that they were having twins, they were filled with excitement. But that changed one week later when Haley was diagnosed with twin-to-twin transfusion syndrome, a rare condition that can occur with twins who share a placenta. One twin exchanges more blood with the other – but doesn’t receive it in return. As a result, one twin experiences malnourishment and possible organ failure, while the other experiences excess cardiac function.

In this case, Archie was the donor twin and William was the recipient. Haley went into labor early, at 23 weeks. William weighed 1 pound, 8 ounces. But Archie made history as the smallest surviving male premature baby in America at just 13 ounces. His parents were told that he only had a 15% chance at surviving. Then, a crushing blow came when Archie was diagnosed with necrotizing enterocolitis (NEC).

However, the twins showcased their strength and determination, even at their young age. Both survived and are now just under 3 months old.

Necrotizing Enterocolitis (NEC)

Necrotizing enterocolitis (NEC) heavily affects premature infants, although it can occur in full-term births as well. The condition causes intestinal inflammation, particularly with the colon. Continuous inflammation results in intestinal holes, allowing intestinal bacteria to infect the abdomen and leading to severe, life-threatening results.

Symptoms usually appear within 2 weeks of birth. These include:

  • Apnea (trouble breathing)
  • Abdominal discoloration and bloating
  • Bloody stool
  • Frequent vomiting, including bile in the vomit
  • Fever
  • Low energy
  • Poor tolerance to eating or low appetite
  • Diarrhea or constipation

Learn more about NEC here.


Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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