Meet Miguelito Pinazo Antor
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Meet Miguel Alejandro Pinazo Antor,
Miguelito was born one (1) month early by emergency C-section on July 10th, 2018. He was born with many birthmarks on his left leg as well as being noticeably longer and bigger than his right. Miguel was then promptly moved to NICU at Jackson Memorial Hospital where he spend two (2) weeks; during which he underwent an MRI but the results were very complicated and no one could explain what was wrong with his vascular system. After we went home, we then were referred to an Interventional Radiologist and a vascular disorder specialist at Boston Children’s Hospital to get a better explanation and opinion on our son’s medical condition. We flew immediately to Boston. There, Miguel went through a series of tests, including Doppler Ultrasound and MRI’s to determine exactly what was wrong with him. Once the results were in they were able to confirm Miguel’s multiple conditions.
He was diagnosed of Hemangiomas, multiple Arterio Venous Malformations (AVM’s). While there is no cure for PWS, most symptoms for Parkes Weber Syndrome can be managed (Approximately 500 people worldwide have this syndrome). This syndrome is a vascular overgrowth that creates AVM's, extra soft tissue, extra veins, arteries and longer, thicker bones. Ultimately it can lead to heart failure.
Miguel is now a 14-month-old charismatic, caring and energetic little boy. Very much loved by his family including his 5-year-old big sister Manuela. Due to his medical conditions we need to monitor his disease for the rest of his life.
Only a few hospitals are familiar with proper treatments; including: The Vascular Birthmark Instituted New York in New York City, The Boston Children Hospital in Boston Massachusetts and Nemours Children Hospital in Orlando Florida in which we have different specialist treating Miguelito. Currently we live in Miami, Fl and we travel to the above mention cities for tests and treatments for his upcoming surgeries.
The medical expenses have been constant and extreme. At any given time, our family has medical bills around $16,000 to be paid. Both of us hold full-time jobs with a full medical insurance plan through our employers, but this coverage is still unable to keep up with the expenses of this disease; out-of-pocket medical costs are massive due to copays and deductibles. Our deductible is $16,000 and our out-of-pocket is $24,000. The contributions raised will be used to cover all preliminary cost for surgery & procedures, co-pays, deductibles and travel expenses.
We are hoping to raise funds to allow us to continue with the procedures that Miguel needs to fight the deterioration of his leg, as well as continued monitoring of his disease.
If you can’t donate at this time, please help us spread the word by sharing this link.
Miguelito was born one (1) month early by emergency C-section on July 10th, 2018. He was born with many birthmarks on his left leg as well as being noticeably longer and bigger than his right. Miguel was then promptly moved to NICU at Jackson Memorial Hospital where he spend two (2) weeks; during which he underwent an MRI but the results were very complicated and no one could explain what was wrong with his vascular system. After we went home, we then were referred to an Interventional Radiologist and a vascular disorder specialist at Boston Children’s Hospital to get a better explanation and opinion on our son’s medical condition. We flew immediately to Boston. There, Miguel went through a series of tests, including Doppler Ultrasound and MRI’s to determine exactly what was wrong with him. Once the results were in they were able to confirm Miguel’s multiple conditions.
He was diagnosed of Hemangiomas, multiple Arterio Venous Malformations (AVM’s). While there is no cure for PWS, most symptoms for Parkes Weber Syndrome can be managed (Approximately 500 people worldwide have this syndrome). This syndrome is a vascular overgrowth that creates AVM's, extra soft tissue, extra veins, arteries and longer, thicker bones. Ultimately it can lead to heart failure.
Miguel is now a 14-month-old charismatic, caring and energetic little boy. Very much loved by his family including his 5-year-old big sister Manuela. Due to his medical conditions we need to monitor his disease for the rest of his life.
Only a few hospitals are familiar with proper treatments; including: The Vascular Birthmark Instituted New York in New York City, The Boston Children Hospital in Boston Massachusetts and Nemours Children Hospital in Orlando Florida in which we have different specialist treating Miguelito. Currently we live in Miami, Fl and we travel to the above mention cities for tests and treatments for his upcoming surgeries.
The medical expenses have been constant and extreme. At any given time, our family has medical bills around $16,000 to be paid. Both of us hold full-time jobs with a full medical insurance plan through our employers, but this coverage is still unable to keep up with the expenses of this disease; out-of-pocket medical costs are massive due to copays and deductibles. Our deductible is $16,000 and our out-of-pocket is $24,000. The contributions raised will be used to cover all preliminary cost for surgery & procedures, co-pays, deductibles and travel expenses.
We are hoping to raise funds to allow us to continue with the procedures that Miguel needs to fight the deterioration of his leg, as well as continued monitoring of his disease.
If you can’t donate at this time, please help us spread the word by sharing this link.
Organizer
Manuel Pinazo
Organizer
Miami, FL