Support Addie Belle

December 10, 2016
With the onset of flu season, Addie is placed in quarantine, avoiding all non-essential human contact. Imagine being isolated during one of the happiest times of the year. And though this required quarantine will reduce Addie’s exposure to respiratory illnesses, it’s not guaranteed. Last year, after several rounds of appeals, Addie was approved by her health insurance company to receive a synagis vaccine which helps prevent a very serious respiratory virus. And then the insurance company changed the requirements for the vaccine. Even as preterm infants start to look healthy and strong, they remain at high risk for severe RSV disease. Given Addie’s already compromised health, I for one would like to see every possible step taken to help this child continue her courageous journey. The cost of the vaccine is a paralyzing $2000 per month. $2000 per month, for six months. ‘Tis the season for giving, for sharing love, for caring for those around us. Please consider helping Stephanie and John obtain the resource they need to provide the best possible care for Adeline Belle. Thank you all and God bless you as you celebrate the season.
October, 2016, an update:
I was beyond happy to join the celebration of her 1st birthday, to view pictures of the well-deserved and long-overdue vacation, and humbled by the fact that this family rallied together a group of caring people to both pay back and pay forward the kindness and loving care they received from the Sinai NICU. But I also know that things are not as they appear.
Addie is still very much in need of some critical and intense care. It's mind boggling yet numbing to see what Stephanie and John juggle. Addie sees an occupation therapist, 2 physical therapists, Nursing educator, GI specialist, Nutritionist, Pulmonary doc, Neurologist, Developmental Pediatrician, Regular Pediatrician, SLP (speech-language pathologist, swallow study), Pediatric Surgeon, and a Motility Specialist (GI), 12 SEPARATE PROVIDERS, and they are in the process of adding an Orthotist – AFO, SLP speech, and an Opthamologist. But it doesn’t stop here.
Addie hasn’t been growing for the past 4 months, food was making her intestines shut down, bordering intestinal failure, so another surgery to add a Broviac catheter is pending (so she can receive nutrition via TPN). Once that’s done, a TPN pharmacist and TPN nurse for home visits will be added as well. It’s numbing, it’s mind blowing, and it is an extraordinary feat. She’s come so far this past year. I chose this picture to show the scale of her accomplishment and growth, from 1lb 8ozs at birth to a 14lb one-year old. Please consider gifting our Nobel Beauty, Adeline Belle to help her continue to get the care she needs. Thank you.
One year ago:
I am “Aunt” Donna and I am reaching out to the amazing group of people who know and love Stephanie and John Durfee. Many of you know the mountain they climbed as well as the harsh and painful falls they have taken in their fertility challenge. Finally, they were blessed with the miracle of the presence of baby Adeline Belle. But sadly, once again, a mountain was placed in front of them, and baby Addie was forced to be born too early. Stephanie and John have amazing strength and courage, something feisty little Addie has inherited. Anyone who knows about infertility treatment knows there is an astronomical financial impact, one that Steph and John willingly accepted. And now that Addie has joined their family, her care also comes at a cost. Again, Steph and John are stepping up to this challenge. As I, and many of you, have been following their journey, I feel helpless. My wish as “Aunt” Donna, is to help ease the burden and a little piece of the stress they are under. Please help in any way you can to show your support. Thank you so very much!