Family Insurance Puts at Risk the Lives of Newborn Babies
A couple from Kansas City are currently and desperately seeking for help to save their newborn babies lives. The main reason because the family’s insurance denies treatment to the newborn twins born with a rare genetic disorder. The couple welcomed into the world two beautiful baby twins. However, the babies are battling for their lives and need a very expensive special treatment. Now, as mentioned, the families’ insurance is denying that support to save the babies. Unfortunately, this is heartbreaking because the baby boys need medication that costs about $2.1 million for each baby. To this the mother, Amanda, said, “It’s a nightmare, an absolute nightmare.”
The newly parents are devastated to process that their babies require such expensive treatment for their wellbeing. After they learn that the newborn twins now fight a “rare genetic disease.” On top of this hard news that they endured, they then face another roadblock nightmare. The insurance and where Amanda works is, “Mosaic Life Care.” Well, they abruptly cut the coverage of the babies drug treatment on April 1, 2024. Surprisingly, just one day after the baby boys were born. Regarding, the hospital facility where they were being taken to obtain their treatment is called, “Children’s Mercy.” This facility tried to do everything they could to keep the babies covered by reaching out to the insurance. Unfortunately, they still denied the coverage.
About the Newborn Twins
The babies enduring this unfortunate case are “Eli” and “Easton” Reed. As stated, they were born in Kansas City. Curiously, they were born right on Easter Sunday, March 31, 2024. Moreover, their parents are Amanda and Austin Reed. Now, in terms of the disease, the parents do indeed speak up about what their babies were diagnosed with.
As well as how it can potentially end their lives, if not attended promptly. So the babies were getting routine state labs. Then the doctors came back with concerning results. The tests came back positive to the disease. Shortly after, they were diagnosed with Spinal Muscular Atrophy (SMA).
About Spinal Muscular Atrophy (Rare Genetic Disease)
SMA is a very rare genetic disease that only occurs and gets transmitted to the offspring when both parents are carriers of that particular gene. This genetic disorder has four types and the differences are visible once symptoms begin. Also once symptoms begin they may be irreversible, which this terrifies the parents. Furthermore, as to why they want to have access towards their treatment, because at the moment they are not showing any symptoms.
Moreover about the disorder, the first type happens in the womb. The second is within the first 6 months of life. The third is in adolescence, and the fourth is in adulthood. “This rare disease causes the spine to atrophy and compress on the spinal cord. This causes the person to lose control of all their muscles (except for the heart), they may become wheelchair users and cannot feed even breathe for themselves” according to Kecia, Amanda’s step sister. Therefore, the family doesn’t understand why the insurance is denying treatment to the newborn twins with this rare genetic disorder. This shows how it is extremely crucial for the medication called, “Zolgensma” (a gene therapy to treat SMA disorder) to continue being administered to the babies.
A Difficult Process
According to People, “as the GoFundMe shared, the family’s insurance company, called an emergency meeting to review all of the information to decide whether or not they will allow their insurance to cover the gene therapy the boys need. But on April 26, the board denied their appeal, the GoFundMe says, leaving the family to pay for the life-saving therapy themselves.”
The twins father, Austin told KMBC, “I’m holding my heart in my hands. The fact that their life is in somebody’s else’s hands, whether they get this treatment or they don’t, you know, then that’s somebody else’s choice and that’s hard to cope with that right now.”
The Family Asks for Help
Amanda Reed, the twins’ mother, has expressed their urgency of the situation. She advocates about it, by emphasizing that time is of essence in treating SMA. She highlighted the critical window of opportunity that they have at the moment before symptoms manifest. As previously mentioned, emphasizing the irreversible nature of the disease once it progresses. She says, “time is of the essence with this…since they don’t have symptoms as of right now.”
Despite the challenges they are facing, one being of their insurance denying treatment for their newborn babies, especially for their genetic disorder, the Reed family remains steadfast in their determination to explore every possible avenue to secure treatment for Eli and Easton. It’s definitely heartbreaking that the insurance has closed their doors to save these little ones lives.
Written by Jeanette Sanchez
Sources:
People: Insurance Denies Newborn Twins Life-Saving Treatment for Fatal Genetic Disorder: “Hard to Cope”
KMBC NEWS: Help pouring in for twins denied life-changing medical treatment by insurance company
KCTV 5: Newborn twins fight rare genetic disease, family says it’ll cost millions of dollars to save their lives
Daily Mail: Help us save our babies: Newborn twins fighting rare genetic disease that family says cost $4 million to treat
Featured Image Courtesy of Joyell VanGelder Flickr Page-Creative Commons License
Inset Image Courtesy of Pictures of Money Flickr Page-Creative Commons License
