Help support our little Skyla

Four years ago our lives were turned upside down when our youngest daughter Skyla was diagnosed with a rare genetic disorder called Potocki-Lupski Syndrome.

Potocki-Lupski Syndrome (PTLS) is a very rare genetic disorder that affects the speech, extreme fussiness to feed, physical growth, and developmental delay to name a few. See link for more information http://ptlsfoundation.org/

Until recently, Our Australian Government didn’t recognize Potocki-Lupski syndrome or PTLS, therefore we didn’t receive any government funding to help pay for the three types of therapy Skyla needs.

Skyla needs early intervention therapy consisting of physiotherapy, occupational therapy, and speech therapy, which are all very costly through the private system.

We are encouraging family and friends for your help in a monetary donation to help Skyla get the early intervention therapy she needs to be able to learn to talk and develop in her coming years and the unknown future health costs associated with PTLS.

July 2015 we had the opportunity to attend the PTLS conference in Houston,Texas USA.  We met founding Geneticists Dr. James Lupski & Dr. Lorraine Potocki who discovered PTLS only in 2008. With our valuable knowledge gained from attending the conference we now need to do further and continual health evaluation and therapies to assist in Skylas development.

Thank you for your support,  it will enable us to have the neccesary support for building Skyla's future.
  • Anonymous 
    • $30 
    • 38 mos
  • fars mars 
    • $20 
    • 55 mos
  • carlos silva 
    • $5 
    • 55 mos
  • adriana de fatima 
    • $5 
    • 55 mos
  • carlos alebrto 
    • $5 
    • 55 mos
See all

Organizer

Sheryl Pjetraj 
Organizer
Sylvania Waters NSW
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