My son has classic PKU and his food options are very limited. We rely heavily on medical foods to fulfill his dietary needs. It is a struggle to have the insurance company provide coverage for the medical formula and foods.
Read moreMonth: April 2019
Grace, Age 11
We have three beautiful children, two of which have PKU. We spend over $120 a month on medical formula, foods, and medication for PKU. If medical nutrition were to be covered, we could breathe easier knowing our children would receive
Read moreSeton, Age 3
Our son was diagnosed with FPIES at around 7 months of age. He is intolerant or allergic to upwards of 40 foods. Even at the current age of 3, he can only eat about 10 foods including the formula (medical
Read morePat and Issac
Hi, I’m Pat and this is my son, Isaac, and husband/caregiver, David. Isaac is high functioning Autistic. I’m Type 2 diabetic. My husband recently has been hospitalized for pulmonary edema. My family is in and out of hospitals a lot
Read moreZoe, Age 4
We adopted our beautiful daughter Zoe three months ago from China. We did extensive research on PKU and prepared ourselves the best we could to meet her needs. We live in TN and I was happy to see that formula
Read moreLincoln, Age 2
Lincoln was diagnosed with a severe milk protein allergy at 2 weeks of age after blood was visibly seen in his stool. His pediatrician changed his formula from Similac to Alimentum RTF (I had a double mastectomy) and this continued
Read moreJamus, Age 9
My son, Jamus, has FPIES plus and our medical team thinks he has something that doesn’t even have a name put to it yet. He will turn 9 on Thursday and he has NO SAFE FOOD. He is 100% tube
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