COVID 19 Resources
See that cute baby at the top of my page? That is our niece, the beautiful Payton Ruby that was born on September 13, 2016. Up until she was born, everything seemed to be routine; however, when she was born they labeled her as having "floppy baby syndrome". Please, consider helping me help my family so that we can alleviate the financial stree from Amber & Brandon's lives.
Payton was born to our niece and nephew, Amber and Brandon. Before having Payton, Amber suffered two miscarriages, both boys and both at 20 weeks of gestation. It was very hard for them so when Amber became pregnant again, this time with a girl, the family was naturally cautiously excited. Amber’s pregnancy had a few hiccups but nothing too out of the ordinary. Payton was a full-term baby born following a normal birth.
After Payton was born, she was not breathing correctly and had to be put on a c-pap machine. They were able to hold her for just two minutes before she was rushed off to the NICU. Whenever Payton tried to eat, she wouldn’t ingest more than five mL at a time and she would also choke on it. Payton stayed in Princeton Plainsboro Hospital for nine days before she was moved to the Children’s Hospital of Philadelphia (CHOP) in hopes of a pinpointing a more specific diagnosis.
Brandon, Amber & Payton all underwent genetic testing. The tests indicated that Brandon and Amber were both carriers of a mutated RYR-1 gene, and Payton has 2 copies of the gene and has been diagnosed as having RYR-1 muscle disease (to read more about this, scroll to the bottom).
We don't know what is in store for Payton since she is only 4 months old. What we do know is that due to her muscles not working properly, she is more prone to things like pneumonia, which could have disastrous results. Right now, Payton needs a series of vaccines to help prevent her from contracting RSV (Respiratory Syncytial Virus). This virus is dangerous to healthy babies, let alone a baby with comprised muscle function.
The RSV vaccine is very expensive. I tried many avenues to help Amber find some funding or coverage for them and it just isn't there. The series of vaccines she needs is close to $3,000.
Payton already has to undergo additional therapies as a result of the RYR-1 mutation. She has to eat through a nasogastric tube becuase she get so so tired from using her muscles to suck - a critical ability in infants.
According to the RYR-1 Foundation:
The RYR-1 receptor is a channel in muscle cells that regulates the flow of calcium, a critical component of muscle contraction. A reduced number and/or abnormal RYR-1 channels lead to dysfunctional muscle contraction and weakness. There is a wide range of symptoms for RYR-1 related muscle weakness, but are typically either non-progressive or very slowly progressive.
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