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SCN2A Australia is feeling grateful.

21 hours ago

Have you heard of #SCN2A? It’s more than just letters and numbers. This rare genetic condition has changed the lives of up to a thousand children and their families around the world. Although rare, SCN2A is one of the most common causes of neurodevelopmental disease and is characterised by neonatal seizures, autism, intellectual disability, schizophrenia and infantile spasms, progressing to epileptic encephalopathy. Many children diagnosed with SCN2A require tube feeding, are non-verbal and require a wheelchair for mobility. On two important days, International SCN2A Awareness Day and #RareDiseaseDay, @SCN2A Australia, with @Oxford PharmaGenesis, share the stories of three families living with children diagnosed with SCN2A and the struggles they have endured. Please help us to increase awareness of SCN2A to give a brighter future for #patients by listening to their heartfelt stories, liking and sharing our posts, following us on social media and/or donating to our fundraising efforts.DONATE HERE: shoutforgood.com/fundraisers/scn2a-21#cureSCN2A #SCN2Aawareness #SCN2Aresearch #RareDiseaseDay2021 ... See MoreSee Less

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SCN2A Australia

2 days ago

SCN2A INTERNATIONAL AWARENESS DAY - FEB 24th Gaba’s story as told by her mum.We welcomed to the world our little warrior, Gabriela, in June 2016. When I first held her in my arms, all I wanted to do was protect her and give her all the love in the world. Gabriela, a.k.a Gaba, was born at 36 weeks and we fought hard to get to 36 weeks, with me having been diagnosed with Grade 4 placenta previa in the second trimester and gestational diabetes earlier on. Eventually, we spent the last trimester in hospital. After Gaba was born, we spent another week in hospital to manage her jaundice, feeding and to regain weight she had lost. We were so happy to finally be able to take Gaba home. Less than a month after being home and around her actual due date, Gaba was diagnosed with whooping cough – so back to the hospital we went for another week!To read more please click the link.............#SCN2A #scn2aawareness #CureSCN2A #SCN2aResearchRare Voices Australia Global Genes ... See MoreSee Less

Gabriela's Story

rarevoices.org.au

We welcomed to the world our little warrior, Gabriela, in June 2016.

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