Meet Paizlee. On the outside, this adorable 8 month old looks like a normal, healthy baby…but in reality she suffers from “Food Protein Induced Enterocolitis Syndrome” or “FPIES” for short. This is a disease that affects the cells and the gastrointestinal system.
When a normal person has an allergic reaction, their antibodies fight whatever caused the reaction. With FPIES, it is a cell-mediated reaction. Unlike “normal” allergies that result in hives (or such) and can be treated with an epi-pen, with FPIES certain foods will trigger reaction causing irritability, vomiting and diarrhea followed by extreme lethargy. Paizlee must be rushed to an emergency room for IV fluids and steroids before she goes into septic shock. In addition, reactions are not immediate- occurring 2-8 hours after the trigger food is consumed.
Getting an FPIES diagnosis is difficult and often only occurs after many serious reactions- Paizlee’s case is severe. As of right now, her triggers are: milk, soy, lactose, corn, rice, squash, carrots and sweet potatoes. She cannot have any of these foods or be touched by someone who has eaten these food who did not wash their hands and brush their teeth. Many kids outgrow FPIES by age 3. However, because of the severity of Paizlee’s case, the doctors aren’t willing to re-test her until age 5.
As you can imagine, having a baby like Paizlee is mentally, emotionally and financially draining. Now that Paizlee has a diagnosis, her parents have a regimented treatment plan along with a meticulous food plan. The only formula she can have is Neocate which runs $60 a can and must be purchased by the case. One can lasts 3 days and is not covered by insurance because it is not administered through a feeding tube amounting to approximately $600/month.
The financial burden is huge. Paizlee’s daddy now works his construction job 7 days a week. Her mother, who is a teacher, works nights at Sonic because leaving Paizlee with a sitter is not an option. Sitters say that adhering to her regimented schedule and monitoring her constantly is too stressful. And after Paizlee quit breathing at one sitter’s home, her parents decided that they would make whatever sacrifices necessary to care properly for their daughter.
Though they have eliminated every extra expense (cable, etc) Paizlee’s parents are just NOT able to make ends meet. Keeping the power on at their home is their biggest need at the moment. $225 is their wish.
Calling all fairies… Want to make life a little better for a precious baby girl and her hard-working, super-stressed parents? Won’t you give $1 to help this family? We will be making payment directly to the power company and any additional monies collected will be used to purchase Paizlee’s outrageously expensive formula.
Reminder: The name of everyone who donates will go on the card sent from BluFairy to the family informing them of their gift. If you’d like to send a note, please leave a comment below. Thank you for your help!!
BluFairy Editor’s Note: In August we collected enough to grant part of this wish … but not all of it. So, we are once again CALLING ALL FAIRIES to help us fully grant this wish and keep this baby warm for the holidays and the winter!!
THANK YOU to all of our fabulous fairies. On Dec. 8, 2010 we paid $130 toward Paizlee’s electric bill. Thank you for your generosity. You can still donate and we will pay it toward the next bill. :o)