Meet Junia Stewart

Junia is an amazing little girl from Salisbury who has been through a lot in her short life. But shes a fighter! Over the next several months Junia and her mother will be up the road for intensive swallow therapy which will complicate life for the Stewart family. We highly encourage you to read Junia’s story below. As always, we’re looking for sponsors and supporters to help raise funds for this amazing family. If you’re interested in supporting a great local cause please reach out! 

“By the summer of 2020, we had added 8 children to our family through birth and foster care/adoption, but we knew that someone was missing. When we announced our pregnancy for #9 we went down to the Fruitland little league ball fields and proudly announced that now we could field a whole baseball team! 18 weeks later, I went to my anatomy scan, and the sonographer spent a lot of time measuring the baby’s neck. Being a part of the adoption community, we knew many families who had adopted children with Down syndrome, and I said “oh, does the baby have Down syndrome? Seems like a 50/50 chance among our friends.” The sonographer laughed nervously. On October 31, 2020 I received a call from my midwife telling me that my 18-week sonogram showed that our baby was not compatible with life. It was four days before an MFM provider could see me to see what our prognosis would be. We discovered that our daughter had Down syndrome, severe hydronephrosis (her kidneys were 3x larger than expected; so large that the original sonogram said that she had no kidneys at all because their edges were so far outside of the expected range), and a complete AVSD heart defect. We sighed and said “Thank God” upon the news because this meant she would live. We joked that our MFM doctor must have been surprised by our joy at a diagnosis that would have left another family in tears, as they didn’t know that we had cried for our baby’s life for the four days leading up to that appointment. 

June was born at Johns Hopkins because of all of her medical complexities. It is the protocol to immediately place a feeding tube for a baby with a heart defect. June’s would not go down her throat, it seemed to coil at the back of her mouth. We soon discovered that June has not only Down syndrome but also VACTERL. She was diagnosed with Esophageal Atresia, Tracheoesophageal fistula, and polydactyly, in addition to her diagnoses from in utero. The day after she was born she had surgery for her esophageal atresia and tracheoesophageal fistula (TEF). The repair went well but unfortunately, after surgery, the repair of the TEF came undone. She was taken back for another surgery immediately. After 12 hours of surgery, she remained intubated for another 7 days.

Due to the trauma of two surgeries on the same area of her trachea, the repair unfortunately failed, and scar tissue formed along the entirety of June’s trachea and esophagus, gluing them together. She required another 12-hour surgery at 9 weeks old. June would spend 88 days at Johns Hopkins Children’s Center before she met her siblings. One month later, we would return for a 3-week stay in the PCICU for open heart surgery. Then, two life flights from Tidal Health, a few ambulance rides, and a few self-admits to the Hopkin’s emergency room, June spent her first two years of life in the hospital more than she was out.  Over the summer of 2024, the EAT team at CHOP discovered a new TEF and June had her 4th TEF repair. One repeat TEF is considered unusual but 4 is nearly unheard of! June was an absolute champ and her repair was successful! 

Unfortunately, June has severe hypotonia and her muscle weakness is far greater than even her peers with Down syndrome. June also has single-side vocal chord paralysis from her many surgeries and intubations. This makes learning to eat and swallow extremely difficult for her and has led to June being 100% G-tube fed for her entire life. She recently was accepted into the Kennedy Kreiger Insitute inpatient feeding program and will be spending 8 weeks hospitalized learning how to take an ounce of food. This is in hopes that she can attend the outpatient program where she will spend another 8 weeks learning to eat without her feeding tube. Her severe hypotonia has led to her not being able to bear weight through her legs and this instability has led to June experiencing anxiety around trying to stand without support. She requires intensive physical therapy to overcome her body’s barriers. For now, June will use a wheelchair but she has unfortunately been denied by insurance 3 times. We will need to purchase June a wheelchair so that she can access all of the other opportunities available to 4-year-olds, like school and sports.

But Junia’s life isn’t a sad story! She is hilarious and smart and has attitude for days. Her siblings adore her! Her oldest sister is pursuing internships with organizations that support disabled adults. Her 17 year old sister is planning to study to be a pediatric OT. And, her life has motivated our family to go back into foster care after closing our home a few years ago. 

We are so grateful to the Tangier Classic for connecting with our family and opening doors for June’s continued success!“