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Billy and Megan Pare welcomed baby Rosalie Jacqueline into the world on March 28, 2015. Rosalie is baby number three, joining her siblings Shiloh and Cosmo.
Shortly after her birth, testing confirmed a genetic disorder, Trisomy 18 (also known as Edwards Syndrome). Edwards Syndrome is very rare, occurring in 1 of 6000 live births.
The stats about Edwards Syndrome are sobering. Half of the infants with this condition do not survive beyond the first week of life, but Rosalie has already passed this milestone, and is doing exceptionally well with breathing, regulating temperature, eating, and gaining weight.
Although the sad truth is that less than 10% of children with Trisomy 18 survive to their first birthdays, some can enjoy many years of life with their families, reaching milestones, and being involved with their community. A small number of adults (usually girls) with Trisomy 18 live into their twenties and thirties.
Megan’s greatest wish is for Rosalie to be one of the girls that goes far above and beyond the prognosis. She wants her to be one of the cases that other parents in this situation read about and draw inspiration from someday.
Megan and Billy were middle school sweethearts. They’ve navigated many of life’s ups and downs together, but suffice it to say this diagnosis is more than any one should ever have to endure. Megan and Billy have many challenges ahead for their family, both emotionally and financially.
The last thing they should be worried about is stretching Billy’s paycheck, or thinking about when he and/or Megan may have to return to work. What is best for Rosalie, and for Megan and Billy, right now is to spend as much time together as possible, helping Rosalie develop, supporting one another, and treasuring this time.
Megan and Billy are kind, caring people, who need a little help right now. As a community, we have an opportunity to come together for this family. By providing a donation, you are giving Megan and Billy the gift of extending time home with Rosalie and helping with her medical costs.
Shortly after her birth, testing confirmed a genetic disorder, Trisomy 18 (also known as Edwards Syndrome). Edwards Syndrome is very rare, occurring in 1 of 6000 live births.
The stats about Edwards Syndrome are sobering. Half of the infants with this condition do not survive beyond the first week of life, but Rosalie has already passed this milestone, and is doing exceptionally well with breathing, regulating temperature, eating, and gaining weight.
Although the sad truth is that less than 10% of children with Trisomy 18 survive to their first birthdays, some can enjoy many years of life with their families, reaching milestones, and being involved with their community. A small number of adults (usually girls) with Trisomy 18 live into their twenties and thirties.
Megan’s greatest wish is for Rosalie to be one of the girls that goes far above and beyond the prognosis. She wants her to be one of the cases that other parents in this situation read about and draw inspiration from someday.
Megan and Billy were middle school sweethearts. They’ve navigated many of life’s ups and downs together, but suffice it to say this diagnosis is more than any one should ever have to endure. Megan and Billy have many challenges ahead for their family, both emotionally and financially.
The last thing they should be worried about is stretching Billy’s paycheck, or thinking about when he and/or Megan may have to return to work. What is best for Rosalie, and for Megan and Billy, right now is to spend as much time together as possible, helping Rosalie develop, supporting one another, and treasuring this time.
Megan and Billy are kind, caring people, who need a little help right now. As a community, we have an opportunity to come together for this family. By providing a donation, you are giving Megan and Billy the gift of extending time home with Rosalie and helping with her medical costs.
Organizer and beneficiary
Meghan Ferguson
Organizer
North Kingstown, RI
Megan Pare
Beneficiary
