PMSF Australia

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

Holly’s Story

Holly’s Story

Holly is a beautiful and brave 14 year old young lady. With a smile that would melt any heart. She meets life head on , with her sidekick and best friend Scooby. This duo are unstoppable.

After a difficult and complicated pregnancy Holly was born premature. At just 3 days old Holly had to have surgery to remove a large ovarian cyst .Along with other medical issues and feeding difficulties Holly needed to stay in the NICU for many weeks.

At 18 months old and after many test Holly was diagnosedwith Phelan-McDermid syndrome. Holly suffers from bowel obstructions, seizures and scoliosis just to name a few. Because of her chronic pain and her numerous medical issues, Holly is required to be on multiple medications, 24 daily to be exact.

Holly has had many surgeries and countless hospital admissions over the years. The last 3 years have been the most heart breaking. Holly’s regression has taken away her ability to swallow food ,which now means she has to be fed via agastrostomy tube. Food was her greatest joy.

Holly is wheelchair bound ,and nonverbal so relies on family to attend to her every need.

Holly is adored by her younger brother and sister. She loves spending time with her family, going on walks and long drives. She is the joy of our life and we are so proud of her. Holly never complains. Most would have given up. She keeps fighting with all she has to stay with us.

Our family lives for today , we will worry about tomorrow tomorrow .


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