Erica's Journey

Erica's Journey Erica was born on 8th January 2013, this page is devoted to her journey. Erica was born on 8/1/2013, six and a half weeks early. Pierre Robin Sequence.
3.

During the pregnancy we were told that she will have a lot of health issues and to prepare ourselves for the worst. Erica is getting stronger every day and is currently at kindie 3 days a week and going to full time primary in 2018. Here is a list of her conditions.
1. Chromosomal disorder 1q deletion 10p duplication with resultant lissencephaly and absent corpus callosum.
2. Short stature and microcephaly.
4. Mild pulmonary stenosis.
5. Soft grade 1 systolic murmur.
6. Bilateral mild hearing loss.
7. Dyskinetic quadriplegia.
8. Cleft palate.
9. Hip Dysplasia.
10. Fed 100% via a stomach PEGJ

Mum is getting her haircut
17/02/2026

Mum is getting her haircut

17/02/2026

She loves it do exercise for Erica

16/02/2026

Rare Voices Australia Partner, the Genetic Support Network of Victoria (GSNV), is hosting a free, in-person Rare Disease Day event on Friday, 27 February in Victoria. RSVP by this Friday (20 February) if you are interested in attending.

The event will bring together people with lived experience, families, clinicians, researchers and system leaders to imagine what an Australian rare disease health system could look like by 2036 and how we can co-design it together. The event will explore:
• Equity and access
• Innovation in genomics, artificial intelligence and digital health
• Improved diagnostic journeys, mental wellbeing and long-term care
• Keeping the consumer voice central in every decision

Keynote panel includes:
• Sarah Powell, CEO, Inherited Cancers Australia
• Dr Erin Evans, CEO, InGeNa
• A/Prof Ali Archibald, Chief Clinical Officer, GenoCare
• Maya Pinn, Lived Experience Advocate, Syndromes Without A Name (SWAN) Australia
• A/Prof Danya Vears, Social Scientist and Ethics Researcher, Murdoch Children’s Research Institute/Deakin University

👉 Register by 20 February: https://events.humanitix.com/the-gsnv-rare-disease-day-2026

16/02/2026

Physio therapy at clinic
16/02/2026

A bless weekend 🫶
14/02/2026

A bless weekend 🫶

12/02/2026
Nice day to go to the park
12/02/2026

Nice day to go to the park

Waiting for mum
04/02/2026

Waiting for mum

03/02/2026

Speech therapy session
Erica she is fucose to listen 👂
03/02/2025

Good morning
03/02/2026

Good morning

Erica she's thinking where did she go a we going to the shops🥰
01/02/2026

Erica she's thinking where did she go a we going to the shops🥰

01/02/2026

After a bath she's tired

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Perth, WA

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