Story
Little Ivy has a rare genetic disorder called Phelan McDermid Syndrome. Ivy is currently 1 of 4 cases in WA (1,300 world wide) however Ivy's case is made even more severe as she has a second syndrome namely, Partial Trisomy Six of which there have been only 47 recorded cases worldwide. Due to the extreme rarity of Ivy's condition she and her parents receive no state government support or funding and is the reasoning behind the creation of this page.
What does this mean for Ivy? Phelan McDermid Syndrome coupled with Partial Trisomy Six mean that Ivy will unfortunately suffer from severely delayed development when compared to similarly aged peers. Basic movements and milestones such as lifting her head, crawling or sitting unassisted are all major achievements in Ivy’s life, disallowing her the chance of complete independence. Ivy also has Congenital heart disease, Duplex kidney syndrome, Kidney reflux, Hypotonia, Joint contracures and Gastroesophageal reflux. All of these physical challenges are also compounded by severe intellectual disabilities and she’ll show traits associated with Autism spectrum disorder. The money from this page goes a long way in supporting Ivy and ensuring she receives the treatments she needs. This also gives her parents the ability to continually care for her, aswell as helping them cover the cost of the things most people forget about, such as parking and specialist treatments. Ongoing physiotherapy has done well to improve Ivy’s motor skills and is one example of the money you donate having a definite impact. No one should have to overcome adversity on their own and with your help, and your donation, you can be the difference in making Ivy’s life that much easier. So if you’re Phelan lucky go ahead and click that donate button and help improve the life of a local Aussie child.