Help Miguelito Pinazo!!!!!

Miguelito was born with Parkes Weber Syndrome, an exceptionally rare genetic disease affecting less than 350 people worldwide.

 

Miguelito was born one month early by emergency c-section on July 10th, 2018. His left leg was noticeably larger than his right and engulfed in birthmarks. He was taken to the NICU at Jackson Memorial Hospital where he spent two weeks and underwent various medical examinations including an MRI. The results were complicated, and no one could explain what was wrong with his vascular system. This is the one of most difficult things any expectant couple can experience. Maria Alejandra and Manuel, where at a lost, not knowing what their child was born with and no one was able to provide them answers or tell them how to help him.

 

Miguel's  parents,  Maria Alejandra and Manuel won’t stop when it comes to their children, and they are a constant in the lives of their family, friends, and community. The family researched every means to figure out what their son was going through. Miguelito was referred to an Interventional Radiologist and a vascular disorder specialist at Boston Children’s Hospital where he was finally diagnosed with Parkes-Weber Syndrome.

 

Parkes-Weber affects a limb with capillary and arteriovenous malformations. At birth, or during childhood, the capillary malformations look like port-wine stains, whereas the arteriovenous malformations present as hemihypertrophy, resulting in length/circumference discrepancies and spontaneous swelling associated with pain. The most significant life-threatening complication is heart failure.

 

Miguel is now a 3-year-old charismatic, caring, and energetic little boy. He has overcome many obstacles through specialized therapy and at his young age and is now at PK3 at St. Theresa School. He is doing well overall but during the last year, his physician noticed his left leg getting bigger, and disproportionately larger that his right leg, despite any conservative management.

 

Therefore, in April 2022, Miguel underwent a magnetic resonance imaging and angiography. MRI images showed significant hypertrophy of his left leg as evidenced by increase in width and length. There was an associated increase in the thickness of the tissue and moderate signal alterations, along with vascular malformations. After discussion with his medical team the decision was made to plan for an embolization procedure this summer. It is imperative that the procedure take place to prevent any consequences such as dilated cardiomyopathic.

 

Only a few hospitals are familiar with proper treatments including The Vascular Birthmark Institute New York, The Boston Children’s Hospital, and Nemours Children’s Hospital in Orlando, Florida. Miguelito will be undergoing surgery on June 15th, 2022, at Nemours Children Hospital. Miguel lives in Miami and travels to Orlando often for tests, he will be returning for his upcoming surgeries.

 

Being such a rare disease, Miguel’s case is being tracked for medical research. His family provides him with the constant medical attention he requires. He has access to quality health insurance, yet much of what he needs, especially portions of his upcoming surgeries are not covered by insurance. His medical expenses are constant and extreme. He requires continuous therapy and medicine, along with specially designed shoes every three months. The contributions raised will be used to cover his medical expenses. We are hoping to raise funds to allow Miguelito to continue with the procedures he needs to fight the deterioration of his leg, as well as continued monitoring of his disease.

 

As parents, we can only imagine the toll this diagnosis has taken on Miguelito’s family. His parents must accompany him to many doctor’s visits, therapy, and be with him at each hospitalization and his upcoming and future surgeries. His health should be their primary concern, having our support financially should allow them to focus solely on Miguelito.

 

Miguelito and his family need the support of our community both in prayer and financially. Help make a difference by donating and spreading the word. If you can’t donate at this time, please share this link. No contribution is too small, and no prayer goes unheard. Let’s tell the world about Parkes Weber Syndrome. Any outstanding funds will be paid towards medical research to learn why this abnormality happens and how to prevent it.

 

Let’s help make this heavy load a little bit lighter for Miguelito and his family. Please keep Miguelito, his parents, sister, and entire family in your prayers.

 

Thank you for your contribution.