Help Kirra to navigate her medical pathway
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Help Kirra Attend an International Conference for Her Rare Genetic Disorder.
Introduction:
In November 2023, our daughter Kirra was diagnosed with Cerebellum Atrophy.
After further investigation, we discovered that she suffers from an ultra-rare genetic disorder known as Congenital Disorder of Glycosylation, which affects the metabolic processes in her entire body.
This disorder was only recognised in 1995 and currently has approximately 1000 active cases worldwide.
Unfortunately, there are no specialists in Western Australia (WA) who specialise in this disorder, making it incredibly challenging for Kirra to receive the necessary medical attention.
The Opportunity:
From the 1st to the 3rd of March 2024, there will be a conference in the United States specifically dedicated to this disorder. Specialists from around the world will be attending this event, including those who work with children diagnosed with the same condition as Kirra. This congress not only provides an opportunity for Kirra to receive specialist consultations, treatment recommendations, and further investigation plans, but also allows us to connect with a supportive community who understands and lives with this diagnosis. Our Request: To ensure Kirra can attend this crucial event and navigate her medical pathway effectively, we kindly ask for your support. The funds raised will primarily cover the costs of flight tickets, accommodation, and transportation, which amount to approximately $10,000 AUD. Your Contribution: By contributing to this campaign, you will help Kirra gain access to the expertise she urgently needs. Your support will enable her to receive the best possible care, connect with renowned specialists, and join a community that can provide invaluable support for her journey. Conclusion: We are eternally grateful for any contribution you can make towards helping Kirra attend this international congress. Your generosity will not only facilitate her medical treatment but also provide her with hope and a network of support. Together, let's make a difference in Kirra's life and empower her to overcome the challenges posed by this rare genetic disorder. Thank you for your kindness and support!
Introduction:
In November 2023, our daughter Kirra was diagnosed with Cerebellum Atrophy.
After further investigation, we discovered that she suffers from an ultra-rare genetic disorder known as Congenital Disorder of Glycosylation, which affects the metabolic processes in her entire body.
This disorder was only recognised in 1995 and currently has approximately 1000 active cases worldwide.
Unfortunately, there are no specialists in Western Australia (WA) who specialise in this disorder, making it incredibly challenging for Kirra to receive the necessary medical attention.
The Opportunity:
From the 1st to the 3rd of March 2024, there will be a conference in the United States specifically dedicated to this disorder. Specialists from around the world will be attending this event, including those who work with children diagnosed with the same condition as Kirra. This congress not only provides an opportunity for Kirra to receive specialist consultations, treatment recommendations, and further investigation plans, but also allows us to connect with a supportive community who understands and lives with this diagnosis. Our Request: To ensure Kirra can attend this crucial event and navigate her medical pathway effectively, we kindly ask for your support. The funds raised will primarily cover the costs of flight tickets, accommodation, and transportation, which amount to approximately $10,000 AUD. Your Contribution: By contributing to this campaign, you will help Kirra gain access to the expertise she urgently needs. Your support will enable her to receive the best possible care, connect with renowned specialists, and join a community that can provide invaluable support for her journey. Conclusion: We are eternally grateful for any contribution you can make towards helping Kirra attend this international congress. Your generosity will not only facilitate her medical treatment but also provide her with hope and a network of support. Together, let's make a difference in Kirra's life and empower her to overcome the challenges posed by this rare genetic disorder. Thank you for your kindness and support!
Organizer
Inna Allen
Organizer
Aubin Grove, WA