Mariah's Miracle Fund
Donation protected
Mariah was born with a rare genetic disorder called Trisomy 18 and following her birth on October 13, 2009 her mother was told she would most likely not live past the next few weeks. The hospital called hospice in after her birth and her mom and family went home to spend their last moments with her. After some time, she met other families that had children living with Trisomy 18, so her mother took her off hospice care to give her a chance at a life. Since then, she’s had many major surgeries, including open heart surgery, tracheostomy, feeding tubes, four spinal surgeries, kidney surgery and Nissen fundoplication surgery, but she’s stayed strong through it all with a smile on her face.
Most recently she has been put back in the hospital at MUSC Children's Hospital for a major infection in her veptr spinal rod hardware, she is responding well to the treatments so far, but has along way to go when she is discharged with being homebound for 2-3 months on gtube IV Antibiotics and weekly labs to make sure the infection has not returned.
While in the hospital her mom has had to leave her baby boy at home, she has been out of work to be by Mariah's bedside, and she is struggling to provide meals for herself daily as hospital cafeteria is limited and she has no transportation.
Mariah's mom has inspired me, she is a fighter, a devoted care giver to Mariah, she has embraced Mariah's condition and learned so much about treatments, surgeries and much more for her baby girl, all while juggling 2-3 jobs at a time.
Prior to this hospital visit her mom had gotten a used trailer for her family to live in and was working so hard to get it livable for her family as it needed alot of work including making it handicap accessible for Mariah with larger doors and bathroom needs. The trailer has been put on hold now and she just dreams of having her own place and having a pink room for Mariah one day and a blue room for her baby boy Collin.
If you can help I would greatly appreciate it and so would Mariah and her mom!
Most recently she has been put back in the hospital at MUSC Children's Hospital for a major infection in her veptr spinal rod hardware, she is responding well to the treatments so far, but has along way to go when she is discharged with being homebound for 2-3 months on gtube IV Antibiotics and weekly labs to make sure the infection has not returned.
While in the hospital her mom has had to leave her baby boy at home, she has been out of work to be by Mariah's bedside, and she is struggling to provide meals for herself daily as hospital cafeteria is limited and she has no transportation.
Mariah's mom has inspired me, she is a fighter, a devoted care giver to Mariah, she has embraced Mariah's condition and learned so much about treatments, surgeries and much more for her baby girl, all while juggling 2-3 jobs at a time.
Prior to this hospital visit her mom had gotten a used trailer for her family to live in and was working so hard to get it livable for her family as it needed alot of work including making it handicap accessible for Mariah with larger doors and bathroom needs. The trailer has been put on hold now and she just dreams of having her own place and having a pink room for Mariah one day and a blue room for her baby boy Collin.
If you can help I would greatly appreciate it and so would Mariah and her mom!
Organizer and beneficiary
Meredith Goodwin Repik
Organizer
Charleston, SC
Ashley Schirmer
Beneficiary
