PMSF Australia

PMSF Australia is here to support the families of children and young adults with Phelan-McDermid Syndrome

Olivia’s Story

Olivia’s Story

Just under 6 years ago our little miss was diagnosed with Phelan-McDermid Syndrome.

We received a call from the Paediatrician in October 2011. Olivia’s test had come back and we needed both Andrew & myself as well as a support person to meet with the Paediatrician.

We went to the Paediatrician’s office that Saturday and were told of the diagnosis. We felt that our lives had been shattered. We felt so alone and had no idea what this diagnosis meant for our princess & out family.

We went home to researched to find that the information we found was too overwhelming & there was only 600 people diagnosed with P-MS in the world.

6 years on and we still have many hurdles to take on but have a much better understanding of P-MS.

We have met so many families with loved ones with P-MS and definitely not feeling so alone with now approximately 1500 diagnosed worldwide & registered with the foundation.

We have also attended 2 international conferences in Orlando, Florida in 2014 & 2016.

Over the past 7 years of Olivia’s life we have spent many days, weeks & months in hospital with illness. Olivia suffers from severe Epilepsy which require 6 x daily medications.

Olivia has shown us the meaning of unconditional love, happiness, hope, faith and patience. She lights up the room when she enters. She shines so much brighter than the stars. We could not be prouder how far our little girl has come & how well she has coped with so much at her age.

We have many more rollercoasters to ride in the coming years. But are thankful we have so much support from our dear family & friends.

xox

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