“Amoré is a tenacious 7-year-old with 18Q Deletion Syndrome. She was diagnosed at six weeks old. 18Q Deletion Syndrome is a rare chromosomal disorder affecting the 18th chromosome. One in 40,000 newborns is affected by this chromosome disorder. There is no cure for her condition.
Symptoms range largely from case to case. Some features include low muscle tone, hearing loss, sight problems, heart defects, kidney problems and features of autism.
Amoré had open heart surgery at 6 months old and sees her cardiologist every 2nd year. She has been diagnosed with Nystagmus and Strabismus and wears glasses to help with these conditions.
There is currently no PMB for her condition and therefore all of her specialist consultations and therapy i.e. Occupational therapy, Speech therapy sessions are paid from their medical aid savings account which is generally exhausted within the first three months of the year. Most of her specialists are also not contracted in with the medical aid and therefore they need to pay cash for their visits. She is non-verbal but they pray for an augmentative and alternative communication device, which the medical aid does not pay for.”
By supporting our fundraiser for Amoré you can make a positive difference in her life – all proceeds from the “Never Give Up” bracelets are donated towards her ongoing medical care and expenses. Together we CAN change the world and help a child in need!
Alternatively, please consider making a donation. Any and all donations welcome. REF: Amoré De Wet.