Miliah, an example for those around her

Miliah Prinsloo, a brave and loving little girl, as her mother Jade Schenckenberg describes her, was diagnosed with a rare genetic disorder.

Jade explains she found out she was pregnant in December 2017. In her first trimester, she had to go to casualty as she started bleeding, they discovered her cervix was too thin and gave her medication. She again landed in hospital during a ‘very serious listeriosis outbreak’. She spent two weeks in hospital receiving medication and injections in her stomach. She thought she had lost her pregnancy, luckily this was not the case. At 30 weeks she visited a different gynecologist who informed her she had hardly any amniotic fluid in her body, resulting in Miliah barely having room to move. She was then put on bed rest, with mandatory checkups and lots of fluids.

After a ‘chaotic’ pregnancy she gave birth to Miliah, however upon her arrival in the world she didn’t scream so they had to give her oxygen, which meant Jade could only see her daughter hours later.

“When I did see her, though, we bonded right away. It was then that I realised how precious my baby girl was,” Jade elaborated.

At only three weeks old Miliah started throwing up continuously, ‘unable to keep any milk down’. After being rushed to the pediatrician she was put on a nasal tube and they started doing tests. She was diagnosed with laryngomalacia and transferred to another hospital to see a gastroenterologist. She had to stay in hospital for a month where they kept her on nasal feeds. Shortly after Miliah became sick again.

“After numerous CT Scans, MRIs, metabolic tests, and a biopsy, doctors still could not tell me what was happening or why. Over the first three years of her life, we visited specialist after specialist, doctor after doctor, and many hospitals. The cycle continued until September 2021 when her genetic results came back and Miliah was officially diagnosed with 16q11.2q21 Duplication,” explained Jade.

This genetic disorder affects less than 10 people in the world, which means there isn’t much information on the subject and thus not much can be done. Jade further explained that the condition causes Miliah to have other health conditions.

“To date, Miliah has also been diagnosed with numerous health issues including, Global Developmental Delay, absent seizures, behavioral issues [self-harm], speech impairment, obesity, intellectual delay, chronic Sinusitis, Reflux and Dysmotility, Patent Ductus Arteriosus, Left Ventricular hypertrophy, neurological issues, Hypermobility, ankle valgus deformity, Lordosis, and left unilateral hypertonia, inflammatory bowel disease and has had a gastro tube put in,” Jade elaborated.

Further, Miliah also needs therapy, as her muscles aren’t strong enough on their own in the beginning of 2022 she had surgery on her feet where they cut ten bones in her feet and repositioned them, she then had to walk with casts, but Jade explains by the third week she was determined to walk alone. She added they are currently scheduling another operation for her ankles.

Arms of Mercy, a non-profit organisation started a fundraising initiative for Miliah by selling bracelets to help with the costs of her treatments. Currently, she is without her medication as the scripts are finished and Jade is struggling with the medical aid, she states their savings are always depleted within the first three months of every year due to the high costs of Miliah’s treatment. She said the first thing she hopes to do is get Miliah to a neurologist, however, Miliah started school at the beginning of 2022, which her mom explains is helping with her progress.

“All the doctors’ appointments, the hospital visits, and seeing the struggle Miliah goes through can get difficult, however, her bravery and determination gives me hope. Miliah is so much stronger than I could have ever imagined. Whenever she giggles after a new achievement, it makes everything feel worth it.
Miliah is also the most lovable person you could ever meet.

“She is now four years old and nonverbal, but she does not let her diagnosis define her, she is happy, determined, persistent, and never lets anything get her down. She loves the water, cows, cats, and being outdoors in general. I am so inspired by her. Despite all her medical conditions and constant need for specialists and hospitals, Miliah always has a smile on her face and never gives up.”

Any person interested in purchasing the bracelets can visit the Arms of Mercy website.