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This fund was created by a small group of close relatives and friends living in Melbourne wanting to make a financial contribution as a token of support to Antish and Nishta during the times that they are going through with the demise of Maïra.
Maïra was born with a very rare and serious disorder known as Alveolar Capillary Dysplasia (ACD) which affects the development of the lungs and their blood vessels. It is estimated that this very rare condition affects around 1 in 100,000 babies and there's only about 200 cases of ACD which have been diagnosed around the world since 1981. The mortality rate associated to ACD is close to 100%. Most babies born with this condition end up on the ventilator within hours and pass away within days. Maïra bravely fought against this condition for 2 months and has even surprised the doctors at the Royal Children's Hospital (RCH) in Melbourne by having been able to come off respiratory support for a brief period. The specialists we spoke to at RCH have conceded that there is more that can be done to understand this rare disease and find new ways to treat it, as sadly the only viable treatment available today is a lung transplant, which in Australia is not possible for children under the age of 2.
With the funds raised, Antish and Nishta want to make their contribution towards ensuring that in the future, no baby has to fight the battle that Maïra did and that no parent has to go through the times that they endured. Several options will be available to them, including contributing to initiatives that are raising awareness on ACD, contributing to the funding of medical research on ACD and also supporting hospitals like the RCH with the expensive treatments required for babies who have unfortunately being diagnosed with ACD or other life-threatening conditions.
Maïra was born with a very rare and serious disorder known as Alveolar Capillary Dysplasia (ACD) which affects the development of the lungs and their blood vessels. It is estimated that this very rare condition affects around 1 in 100,000 babies and there's only about 200 cases of ACD which have been diagnosed around the world since 1981. The mortality rate associated to ACD is close to 100%. Most babies born with this condition end up on the ventilator within hours and pass away within days. Maïra bravely fought against this condition for 2 months and has even surprised the doctors at the Royal Children's Hospital (RCH) in Melbourne by having been able to come off respiratory support for a brief period. The specialists we spoke to at RCH have conceded that there is more that can be done to understand this rare disease and find new ways to treat it, as sadly the only viable treatment available today is a lung transplant, which in Australia is not possible for children under the age of 2.
With the funds raised, Antish and Nishta want to make their contribution towards ensuring that in the future, no baby has to fight the battle that Maïra did and that no parent has to go through the times that they endured. Several options will be available to them, including contributing to initiatives that are raising awareness on ACD, contributing to the funding of medical research on ACD and also supporting hospitals like the RCH with the expensive treatments required for babies who have unfortunately being diagnosed with ACD or other life-threatening conditions.
Co-organizers4
Manisha Jadoo
Beneficiary

