Cillian's OEIS and Spina Bifida Journey

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113 donors
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$11,673 raised of $50K

Cillian's OEIS and Spina Bifida Journey

This is Cillian (pronounced with a K), Raven & Aaron St. Pierre's baby boy, still in the womb! He is due 11/11/21. At Raven's 20 week anatomy scan, she and Aaron were told Cillian did not have a bladder, he was missing half of his spine, and that he had no chance of life outside of the womb, and they were encouraged to terminate. They waited what seemed like forever for the MRI to confirm the grim diagnosis. And then - they were given HOPE!! Indeed, Cillian has complications; he has been diagnosed with OEIS, the rarest and most complicated form of cloacal exstrophy, and he has spinabifida, but only affecting the very lower portion of his spine; less severe than initially explained. But they have been told that BOTH are OPERABLE after delivery, so this sweet little boy has a fighting chance! Their case has been accepted by Children's Hospital of Philadelphia (CHOP) and they will be relocating there when Raven is 32 weeks (9/21/21). They hope to keep the baby in utero until about 37 weeks and deliver Cillian via c-section. His first surgery (OEIS #1) will be 2-3 days after birth, with a minimum of two months in the NICU. His second surgery (spinabifida) will be about 3 months after birth. His third surgery (OEIS #2) will be when he is about a year old. He will have many years, through his teens (a lifetime really) of treatments, follow-ups, and specialists, and possibly several more surgeries ahead.

 

Raven & Aaron are so incredibly grateful for the outpouring of support they've received from their local community and family; however, they are uncertain of the upcoming financial burden. Yet, they know that God has been providing miracles along the way! As you feel lead, please consider donating to support the unknown expenses, including their full length of stay while in Philadelphia, medical co-pays, costs associated with traveling back and forth from Florida, and equipment, supplies, and other items needed for a special needs child.

 

Thank you in advance for your faithful prayers and donations.

Co-organizers2

Angie St. Pierre
Organizer
Fort Lauderdale, FL
AARON ST PIERRE
Beneficiary
Cricket Hinton
Co-organizer
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