Miliah is just over 3 years old and has an incredibly rare genetic disorder, 16q11.2q21 duplication – which was discovered only recently after years of tests and doctors’ visits. She struggles through global developmental delay, speech impairment, seizures, a heart defect, self-harming issues, obesity and other ailments.
Miliah has already gone through:
3 MRI’s; ECG Tests; Ph7 Test; Tube feedings; Biopsy; 2 Berium Swallows; 2 Metabolic Tests; 2 Geneticist consultation;
Physio since 8 months and needs to continue; Speech therapist, she had every two weeks; Grommets put in; CT Scan;
Xrays; Sonars; Scopes done; Occupational therapy; Correctional shoes (for a year – which hasn’t helped, hence why she will now need to undergo surgery).
Miliah was also diagnosed with chronic sinusitis, which means she’s sick most of the time, with chronic reflux and dysmotility.
There is not much information on her chromosome genetic disorder as it is so rare, which causes a lot of uncertainty, even for some Drs.
Miliah needs ongoing therapy (speech, OT, PT), frequent neurological check-ups, testing and medications, Specialists for her stomach and immune system, as well as many others.
She had surgery on the 18th of January 2022 in order to correct her metatarsus adductus to help her jump, run and walk normally. The bones had to be broken and placed correctly, and Miliah is due back in theatre in 3 weeks. Recovery will take longer than expected (around 6 months to a year) and she won’t be able to go to school for the next 5 to 6 months. During these first 3 weeks Miliah will not be able to walk at all and her legs need to stay elevated, either at home in bed, or on the couch, or in a wheelchair when walking around the complex or anything.
Her mommy works part-time to be there for all her go-to therapies, hospital check-ups and specialist visits, but she had to stop all forms of therapy due to financial constraints.
Please open your heart and support our fundraising efforts for Miliah – all proceeds from the “Incredibly Precious” bracelets are donated towards her ongoing medical care and expenses. Together we CAN make a positive difference and help a child in need. Together we can change the world… one bracelet at a time!
Alternatively, please consider a donation; any and all donations welcome. REF: Miliah Prinsloo.
Follow her Facebook Page – Helping Miliah – for live updates on her journey.