Baby Mia Rose

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$15,555 raised of 15K

Baby Mia Rose

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Hello. As many of you know, Melissa and Mike welcomed their beautiful baby daughter Mia Rose into the world on 12/16/22. She is the absolute sweetest and we all instantly fell in love.

However, our joy is mingled with concern - Mia was diagnosed with Propionic Acidemia: a rare, genetically-inherited metabolic disorder. She lacks an essential enzyme in her liver, resulting in a susceptibility to amino acid buildup in her bloodstream when she consumes protein. Ammonia and other metabolic byproducts can build up in her blood, triggering episodes which can quickly lead to serious complications including brain and other organ damage. Heart conditions and developmental delays are a real possibility for her.

Only about 1 in 100,000-200,000 people are diagnosed with Propionic Acidemia. Mia had to spend considerable time in the NICU at Mount Sinai Hospital in NYC, one of the few hospitals in the US where they monitor and treat rare disorders like these.

While Mia's family's outlook is positive, the challenges they will inevitably face throughout Mia’s lifetime are daunting. Mia had her first metabolic episode just 24 hours after her birth. Episodes can also be triggered by simple things like going too long without food, or getting sick. These episodes require immediate medical intervention to minimize the risk of long term damage. Melissa and Mike were given a medical pager number for Mia to quickly reach their team of doctors 24/7/365 because episodes can happen at anytime.

Today, there is sadly no cure for Propionic Acidemia. Mia’s condition will be managed through a very low protein diet consisting of special metabolic formulas, and medications meticulously measured and administered around the clock. The long-term plan for Mia is dependent on continued medical advancements in the treatment of Propionic Acidemia. Mia may need a liver transplant as she gets older. One glimmer of hope is gene therapy (which is currently experimental). Using gene therapy to treat Propionic Acidemia in human medical trials began in 2021.

One thing is certain: both the current and long-term efforts to keep Mia healthy and improve her quality of life are costly. Medical insurance covers a portion of the care she receives, but there are many additional costs including frequent travel to specialists, unpaid time off work, experimental treatments (which will likely be paid for out of pocket), etc.

We want to do whatever we can to support Melissa and Mike. Many of you have reached out to ask how you can help so we’ve decided to set up this GoFundMe. If you have the means to do so, please consider donating. All funds received will go directly toward keeping Mia healthy and improving the quality of her life. Please also consider sharing this page to help spread the word.

Mia has already been subjected to countless blood tests, MRIs, ultrasounds, tube feedings, a blood transfusion -- the list goes on. Mia is a fighter and we hope and pray that her long term outlook continues to improve.

Thank you for reading and sharing, and please keep Mia and her family in your thoughts and prayers.

Organizer and beneficiary

Jennifer Wygand
Organizer
Wantagh, NY
Melissa Napoli
Beneficiary
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