An Invitation to Join Vera’s Village
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On April 3, 2022, Josh and Katie Macel welcomed Vera Rose Macel into the world. Katie was followed by CHOP throughout her pregnancy, as there were a few indications in-utero that Vera would need some support once born. Her doctors anticipated that Vera would require a brief NICU stay to monitor her kidneys. After a very stress-filled pregnancy, Vera arrived and required major intervention from the skilled doctors and nurses at CHOP. Vera was non-responsive at birth and had to be immediately intubated, as she was not breathing on her own. It was quickly apparent to the CHOP team, as well as Katie and Josh, that there were way more complications than anticipated. To say they were all shocked and in disbelief is a true understatement.
After the course of the first few days at CHOP, Katie and Josh had countless meetings with neurology, genetics, urology, plastics, ophthalmology, and neonatology. Our family was heartbroken as Vera was recently diagnosed with an extremely rare genetic disorder, Bohring-Opitz syndrome. BOS is caused by a mutation in a single gene that has devastating effects on various bodily systems, which will significantly impact most aspects of Vera’s development. Only 60 children diagnosed with this syndrome are presented in medical articles worldwide.
While doctors cannot predict exactly how the future will look for Vera, it is anticipated that she will require daily specialized care, numerous therapies, as well as cranial, spine, and kidney surgeries within the first three months of her life. It is expected that Vera will remain at CHOP for the next few months as her team continues to monitor her progress and needs. Vera currently has a feeding tube and uses a CPAP machine when sleeping, and her team would like her to gain weight and stabilize her oxygen during sleep before she goes home.
Katie will be unable to return to work for the time being. There are many other financial unknowns, such as medical bills, insurance premiums, and costs for traveling and staying in the city. They are currently spending most nights at the Ronald McDonald house, which has been a huge blessing during this incredibly difficult time.
As Katie’s family, we are committed to care for Vera, Marielle, Katie, and Josh. Many of you have reached out asking what can we do to help. We truly appreciate all of the kind words, prayers, meals, and support we have received over the past three weeks. We hope you will join us in this village of support for our precious Vera.
Katie and Josh's love and commitment to their family and each other is deep. They made courageous decisions over the past few months and continue to show tremendous strength, as each day brings new challenges and more unknowns. We hope you will join us in supporting the Macel Family, especially our Vera Rose, who is truly one in a million.
With love,
Scott & Mary Beiter
Tom & Julie Hayes
Jimmy & Emily Sonnon
After the course of the first few days at CHOP, Katie and Josh had countless meetings with neurology, genetics, urology, plastics, ophthalmology, and neonatology. Our family was heartbroken as Vera was recently diagnosed with an extremely rare genetic disorder, Bohring-Opitz syndrome. BOS is caused by a mutation in a single gene that has devastating effects on various bodily systems, which will significantly impact most aspects of Vera’s development. Only 60 children diagnosed with this syndrome are presented in medical articles worldwide.
While doctors cannot predict exactly how the future will look for Vera, it is anticipated that she will require daily specialized care, numerous therapies, as well as cranial, spine, and kidney surgeries within the first three months of her life. It is expected that Vera will remain at CHOP for the next few months as her team continues to monitor her progress and needs. Vera currently has a feeding tube and uses a CPAP machine when sleeping, and her team would like her to gain weight and stabilize her oxygen during sleep before she goes home.
Katie will be unable to return to work for the time being. There are many other financial unknowns, such as medical bills, insurance premiums, and costs for traveling and staying in the city. They are currently spending most nights at the Ronald McDonald house, which has been a huge blessing during this incredibly difficult time.
As Katie’s family, we are committed to care for Vera, Marielle, Katie, and Josh. Many of you have reached out asking what can we do to help. We truly appreciate all of the kind words, prayers, meals, and support we have received over the past three weeks. We hope you will join us in this village of support for our precious Vera.
Katie and Josh's love and commitment to their family and each other is deep. They made courageous decisions over the past few months and continue to show tremendous strength, as each day brings new challenges and more unknowns. We hope you will join us in supporting the Macel Family, especially our Vera Rose, who is truly one in a million.
With love,
Scott & Mary Beiter
Tom & Julie Hayes
Jimmy & Emily Sonnon
Organizer and beneficiary
Emily Sonnon
Organizer
Collegeville, PA
Katherine Macel
Beneficiary
