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Thoughts for Rhylan
About Rhylan Rhylan was born on April 4th, 2013. Suspected of having a chromosomal disorder, he underwent strenuous testing which revealed many physical abnormalities. The most urgent of these were an atrioventricular septal defect and a hypoplastic aortic arch. Rhylan had surgery to repair the AVSD and to reconstruct some of his heart valves at just twelve days old.
With his first surgery behind him, Rhylan was formally diagnosed with Smith-Lemli-Opitz Syndrome at three weeks of age, and immediately began cholesterol supplementation.
Rhylan has low muscle tone, which makes it difficult for him to coordinate a sucking action in order to feed. He was fed through a nasogastric tube for the first five and a half months of his life, before having a PEG inserted. He is much happier without a tube stuck to his face!
About Team Rhylan This is us! We're an ordinary group of mums who are trying to achieve something extraordinary to help a fantastic family and a precious little boy. Our dream? Not only to raise enough money so that Rhylan's family can replace their small car with one that is large enough for the whole family, as well as potentially modifiable in the future should Rhylan require a wheelchair or large equipment, but also to raise awareness of SLO Syndrome. We would love this to be the beginning of a new foundation to support the families of children like Rhylan across Australia.
Pakeham, Vic 0423 057 467
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