If you've ever had to leave your newborn baby in NICU for extended care, you know how heart wrenching it is. And if you've ever had a family member diagnosed with a rare genetic disorder, you also know all too well the struggles, heartbreak, love and community support that comes along with it. On July 18th, 2024, Jasmin and Steven welcomed their newborn baby boy into the world! Sawyer James. And boy is he a fighter! He has been in the NICU for over two weeks working on gaining muscle strength and trying to get stronger so he can go home with mom and dad. While there, Sawyer James was diagnosed with a rare syndrome called Prador willi, affecting his 15th chromosome. Mom and dad have been driving back and forth every day to the hospital, and little Sawyer is gaining strength daily! There are talks on the horizon of him going home in a week or so possibly, but will be needing physical therapy, occupational therapy, and many doctors visits along the way to help keep him healthy and thriving. Steven has recently had to go back to work, using the only family vehicle to get up to the hospital to see their baby, or to get to appointments when he comes home. As new parents, this is the last thing you would hope or wish for. But just the thing your tribe wants to help rally around! And I know we have a large one that has been very concerned, yet very hopeful and helpful throughout this journey. Many of you have asked what you can do to help. So we've started a go fund me, to make it easy for you to give your support and love. The cost of driving back and forth to a hospital should be the least of a new parents worries. As well as how to get there. We would love to be able to help relieve some of the stressors of the daily grind, and get them from point a to point b safely. There will be many car trips to be had, and a reliable vehicle is very important right now. There will be other costs along the way that some of you may want to help with; but for now, this is the first thing I can think of that would help right away. Gas cards are another great option! It truly takes a village! And we're so happy to have you as ours. :) Let's help raise this new family up in spirit! As well as help spread awareness of prador willi. Please ..do some research. There are others out here with this same diagnosis, needing all the love and support they can get. And the more we all know, the better we all are. Thank you friends and family for all of your care and concern.
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