What if Baby Sera is your child? She has an ultra-rare health condition, needs timely help to stay alive

Health By Chetana Belagere 06/10/2023 Read the article

“I watch my 16-month-old daughter Sera fight an ultra-rare disease every day,” said a tearful Michael Andrew, a father waging war against his daughter’s condition, and the bureaucracy.

[{"selector":"#anim-92dacd76-7982-47aa-a375-e71113771eb2","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-0e5342a4-5ad8-47c3-96e7-93b985abf94e","keyframes":{"transform":["translate3d(0px, 46.52301%, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-247c7931-38c6-40bc-a443-c3551600d832","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-9d4dd83a-d8e0-4082-bf41-d3e519c590cc","keyframes":{"transform":["translate3d(0px, 140.46721%, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-dbc3614b-e810-485e-9391-5e2c913a27b9","keyframes":{"transform":["translate3d(-133.4008%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"both"}] [{"selector":"#anim-d4751aab-9168-465f-8bd9-516beb78fa62","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"both"}] [{"selector":"#anim-67dc1c19-2e65-4968-840f-cdbb77df73be","keyframes":{"transform":["scale(0.15)","scale(1)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"forwards"}] [{"selector":"#anim-123bb5a0-41df-486f-9efe-357cbc1a8832 [data-leaf-element=\"true\"]","keyframes":{"transform":["translate3d(-19.79166643911812%, 0, 0)","translate3d(0%, 0, 0)"]},"delay":0,"duration":2000,"easing":"cubic-bezier(.3,0,.55,1)","fill":"both"}] Read the article Health

Michael Andrew and his wife Teresa, natives of Kerala settled in Karnataka’s Mysuru, are now leaving no stone unturned to save their only daughter.

[{"selector":"#anim-d264b0cb-fab7-4f89-b568-69191532ce68","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-af87bd0c-a2e7-40f0-b145-fc4a776fec3c","keyframes":{"transform":["translate3d(0px, 42.39646%, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-08d0d473-5674-4c95-9c14-3623fd7d9c2e","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-408632d6-709e-44b4-af8c-13fbb868dd98","keyframes":{"transform":["translate3d(0px, 148.45048%, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-25fd3974-b3e4-4fbb-b1ee-88014bc1a8c7 [data-leaf-element=\"true\"]","keyframes":{"transform":["translate3d(-31.249999886225726%, 0, 0)","translate3d(0%, 0, 0)"]},"delay":0,"duration":2000,"easing":"cubic-bezier(.3,0,.55,1)","fill":"both"}] [{"selector":"#anim-41d36278-9c75-4208-b230-7441c252de6d","keyframes":{"transform":["translate3d(-106.28415%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"both"}] [{"selector":"#anim-84dae25d-1eb5-47ca-a340-c278e2f33a0c","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"both"}] [{"selector":"#anim-3daa5b41-993b-4c0f-bc07-a519482e7b8b","keyframes":{"transform":["scale(0.15)","scale(1)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"forwards"}] Read the article Health

The day of the diagnosis of this extremely rare genetic disease called infantile hypophosphatasia, of which the baby is the only case in India was devastating to the parents.

[{"selector":"#anim-c29838d3-d803-4fc7-8612-f9faf12bd888","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-b3f8b363-bf30-48e3-af7b-35d8913fa5bf","keyframes":{"transform":["translate3d(0px, 46.52301%, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-e269f9e1-c212-4d1b-a87c-a7d7b564fa4f","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-8c031ce0-3b1d-4828-9008-f4b782d78932","keyframes":{"transform":["translate3d(0px, 141.03538%, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-84547755-c81f-487a-ad0b-250cf81315bc [data-leaf-element=\"true\"]","keyframes":{"transform":["translate3d(-7.816102741723835%, 0, 0)","translate3d(0%, 0, 0)"]},"delay":0,"duration":2000,"easing":"cubic-bezier(.3,0,.55,1)","fill":"both"}] [{"selector":"#anim-1fd50b08-c7ea-4e07-a626-8dd9389102c0","keyframes":{"transform":["translate3d(-146.71362%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"both"}] [{"selector":"#anim-1b7a4263-0745-4b91-aa1b-29e3a71f81e9","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"both"}] [{"selector":"#anim-52796a2e-55da-4ccf-9ca7-66cf469f7151","keyframes":{"transform":["scale(0.15)","scale(1)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"forwards"}] Read the article Health

Her initial diagnosis was hypercalcaemia. Hypercalcemia refers to a condition where there is an abnormally high level of calcium in the blood.

[{"selector":"#anim-78b44b1b-9e87-47d8-86e1-1b66c1d358c9","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-0e2f4d4e-4ec9-4d5c-bd43-ea38b68f6137","keyframes":{"transform":["translate3d(0px, 42.39646%, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-fa8b4896-45cd-49ed-8455-9f53a34cded4","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-2eb3dc59-7710-4720-80e8-cb546a13c9f1","keyframes":{"transform":["translate3d(0px, 148.45048%, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-0aebbe78-b2e8-4c2e-b174-0db0699be027 [data-leaf-element=\"true\"]","keyframes":{"transform":["translate3d(-31.253046685074242%, 0, 0)","translate3d(0%, 0, 0)"]},"delay":0,"duration":2000,"easing":"cubic-bezier(.3,0,.55,1)","fill":"both"}] Read the article Health

“This metabolic disorder is caused by a genetic mutation that prevents her body from producing the enzyme ALPL, which is essential for the baby to absorb the calcium.”

[{"selector":"#anim-1eaf90d3-c93d-4d4a-b9ad-cd5d131229ca","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-d59edf55-419c-4934-8308-43e68956f4ce","keyframes":{"transform":["translate3d(0px, 45.14748%, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-0ae409d6-6edb-4329-bae1-cfa4a8f2bb3d","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-7c702174-87cc-40e5-bcc2-5047e5ba7ea3","keyframes":{"transform":["translate3d(0px, 141.03538%, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-8a6cc267-adc9-4eb8-be65-c9357a155b44 [data-leaf-element=\"true\"]","keyframes":{"transform":["translate3d(-28.90624987200394%, 0, 0)","translate3d(0%, 0, 0)"]},"delay":0,"duration":2000,"easing":"cubic-bezier(.3,0,.55,1)","fill":"both"}] [{"selector":"#anim-9bbcfdef-59db-4161-8a86-eabca7617cfa","keyframes":{"transform":["translate3d(-107.70308%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"both"}] [{"selector":"#anim-75fc6acf-8c03-468b-8596-1ab935b5f193","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"both"}] [{"selector":"#anim-78c1a790-25f6-445c-9f1f-dc707a1b1f2d","keyframes":{"transform":["scale(0.15)","scale(1)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"forwards"}] Read the article Health

They were informed the only treatment available is enzyme replacement therapy (ERT) which is given lifelong. They managed to get the expensive medication only after five months.

[{"selector":"#anim-e1688a47-c068-4880-afaa-f682e55379ab","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-0f505bef-e104-4873-8727-b50cba296dab","keyframes":{"transform":["translate3d(0px, 46.52301%, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-9993a38a-a315-44a2-b078-d5229e984c4a","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-3441477d-ba42-4777-81e5-cdd94b5f4754","keyframes":{"transform":["translate3d(0px, 143.87629%, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-622c5420-f0df-4566-97e5-f458505f4a36 [data-leaf-element=\"true\"]","keyframes":{"transform":["translate3d(-12.499999772451451%, 0, 0)","translate3d(0%, 0, 0)"]},"delay":0,"duration":2000,"easing":"cubic-bezier(.3,0,.55,1)","fill":"both"}] [{"selector":"#anim-12efa8f0-e23b-4515-a5ca-e76e414da265","keyframes":{"transform":["translate3d(-141.96428%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"both"}] [{"selector":"#anim-7843ed8e-efe1-418f-a020-6b6a4636ee9e","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"both"}] [{"selector":"#anim-f49613a6-6eb1-4f4b-9077-aa23f7444add","keyframes":{"transform":["scale(0.15)","scale(1)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"forwards"}] Read the article Health

“Only a collective support along with government backing can save my daughter,” said Michael. Also, a petition has started on change.org to seek support to help fund Sera’s lifelong treatment.

[{"selector":"#anim-d8cdab93-b11a-4479-9be9-90825d459895","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-48e29568-cb7d-4c88-b599-eda2fae791ef","keyframes":{"transform":["translate3d(0px, 46.52301%, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-ae548846-04bf-47a9-8046-60dfeab1c349","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-3c2bb4db-8fa9-4200-8491-6b62082b094a","keyframes":{"transform":["translate3d(0px, 145.58084%, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-70e5c446-51de-41c0-a9f0-4eeb564aa88c [data-leaf-element=\"true\"]","keyframes":{"transform":["translate3d(-31.249999886225726%, 0, 0)","translate3d(0%, 0, 0)"]},"delay":0,"duration":2000,"easing":"cubic-bezier(.3,0,.55,1)","fill":"both"}] [{"selector":"#anim-d9f6bdda-380b-4cce-8882-4c9b38e5cb13","keyframes":{"transform":["translate3d(-108.19208%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"both"}] [{"selector":"#anim-7da81be0-d429-4216-9b86-6c4a7abf6fb2","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"both"}] [{"selector":"#anim-978b526c-321a-446b-8ee7-0f3a9316f381","keyframes":{"transform":["scale(0.15)","scale(1)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"forwards"}] Read the article Health

After writing to two researchers in the US, Michael found out that AstraZeneca, the pharmaceutical titan behind the precious drug, is on the cusp of a significant global trial.

[{"selector":"#anim-2b3e2f86-55d8-4914-b872-a54684799958","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-f2deca56-72ec-4b91-bac7-d92366ef34de","keyframes":{"transform":["translate3d(0px, 47.89852%, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-b980ac73-4c28-4d41-b0bc-8ff0622aed2f","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-799c490d-1d77-4ba2-99b8-b40fd2597389","keyframes":{"transform":["translate3d(0px, 146.71719%, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-61c145a6-e682-4329-b898-03826a4319e8 [data-leaf-element=\"true\"]","keyframes":{"transform":["translate3d(-35.21169345865223%, 0, 0)","translate3d(0%, 0, 0)"]},"delay":0,"duration":2000,"easing":"cubic-bezier(.3,0,.55,1)","fill":"both"}] [{"selector":"#anim-55d175cb-a952-4eac-b073-014487b1d326","keyframes":{"transform":["translate3d(-110.41055%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"both"}] [{"selector":"#anim-980d0826-4982-49c9-9a94-a406c501b953","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"both"}] [{"selector":"#anim-661dd984-4f98-436c-b660-177e0017dd35","keyframes":{"transform":["scale(0.15)","scale(1)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"forwards"}] Read the article Health

With eyes glistening, Michael added: “If Sera can just hold on until next year… my baby will survive. Please come forward and help me save my baby.”

[{"selector":"#anim-9aa78714-c9ab-4d41-a486-fecea2a3fc05","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-6e5f40c1-ab54-40a2-bc95-817720725d26","keyframes":{"transform":["translate3d(0px, 43.77197%, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-09cd5b7a-0435-4c83-8839-3be45bbe0a78","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-f34f72c7-2694-4bc8-ba7e-b66f11242a04","keyframes":{"transform":["translate3d(0px, 155.25319%, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-fb67c6b5-8a6d-4f87-a550-5e6bc8bb895f [data-leaf-element=\"true\"]","keyframes":{"transform":["translate3d(-12.499999772451451%, 0, 0)","translate3d(0%, 0, 0)"]},"delay":0,"duration":2000,"easing":"cubic-bezier(.3,0,.55,1)","fill":"both"}] [{"selector":"#anim-7f828a16-362e-4975-a63d-aee50bc75d3b","keyframes":{"transform":["translate3d(-132.07171%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"both"}] [{"selector":"#anim-4fa07f4d-44c4-4d59-80a6-05d7335dac8e","keyframes":{"opacity":[0,1]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"both"}] [{"selector":"#anim-3064154f-4fb5-441a-a9ed-dbb962e9a3be","keyframes":{"transform":["scale(0.15)","scale(1)"]},"delay":0,"duration":600,"easing":"cubic-bezier(0.4, 0.4, 0.0, 1)","fill":"forwards"}] Read the article Health