Help 1 year 8 Months old Baby Monza with (Spinal Muscular Atrophy Type 1) Breathe with permanent Ventilator (Currently still in ICU) required to live

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Baby Monza was initially diagnosed with SMA Type 2. Now, at 1 year 8 months old, she experienced breathing complications and when admitted to the hospital, doctors found out it was SMA Type 1. SMA is a very rare disease in the Philippines, in fact, doctors requested to make a case study on her for future reference. SMA is a disease that does not allow muscle growth hence movement is limited including swallowing. Prior to her complications, she had progress and learned minor hand movements and had muscle therapy, until we discovered she had TYPE 1. Currently, She is still in ICU and they have tried to extubate her but her lungs can no longer support on its own even with an external oxygen machine at 100% capacity. She had to undergo several treatments as it was also discovered her lungs had a viral infection which needed to be treated. Today was supposed to be the day doctors would try to extubate her and see if her lungs can be supported with an external oxygen machine, but her lungs are too weak and she would need to be supported with a ventilator for the rest of her remaining life. A ventilator would cost millions, and currently my sister and her husbands option would be to rend a ventilator for 70,00 pesos a month. My sister's could not manage her work anymore as she needs to be constantly with her child. We are reaching out to anyone, for any amount to support this financial need for her to breathe and live. Her condition, SMA Type 1 is a deadly genetic disease. She will not live long, instead what we want is to make her remaining days, months, years, without suffering. She just recently learned to talk, and slightly move, only to be met with the worse possible scenario for SMA. These are all effects of SMA type 1, and is untreatable. She smiles a lot, engages non verbally with her parents and nurses and even attempts to talk. Her remaining life, as long as there is a ventilator can still be possible for us, her parents, and her sister to create more memories before her passing. Currently, we are financially depleted as the hospital and medical bills have sky rocketed to 600,00 pesos and counting. We just need to have the ventilator rental so she can be at home with her family and not spend her remaining days in a hospital.

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  • Kirk Pacana
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