Having medical coverage for formula and medical foods would be an enormous relief. Even though Owen is only 12, I have worried since ...
I am currently a foster mom to a 2 year old with PKU. We live in the state of NC where medical food is not covered. His food is very expensive & without coverage, it is nearly impossible to buy.
I am currently a foster mom to a 2 year old with PKU. We live in the state of NC where medical food is not covered. His food is very ...
MSUD powder is expensive - $2,775.00 for about 2 1/2 months of powder and is the mainstay of the diet for an MSUD person. Insurance always denies payment for other protein supplements such as valine and isoleucine which are recommended by the doctor.
We purchase medical insurance from employer. Employer is self insured so not subject to the Pennsylvania Medical Foods Act. MSUD ...
At 1.5 years old she weighed 14 pounds and had g-tube surgery. She's 3 now and has never eaten food.
Our beautiful happy and energetic three year old daughter Danielle was born at 35 weeks New Year’s Day 2016. She was diagnosed at ...
I am aware that we are some of the lucky ones in that we have great medical coverage via TRICARE. Others should be afforded the same opportunity for coverage
Evan was born with MSUD and we were lucky that TRICARE covered his formula and supplements until his transplant. At the time, they did ...
When Garrett was born at 9 lbs 4 oz, we could not have been more thrilled to have a such a fat, happy baby! When we received the call ...
Having coverage for medical foods that my daughter requires is necessary for her success of her diet management! Without the only ...
Asher is my happy, smart, funny, rambunctious four year old. He loves to play with tractors, his sister, swim, and eat! He loves ...
Our PKU story is just getting started. We are older parents now. At ages 45 and 37, we decided to have a baby. We had just gotten ...
The formula is very expensive!...My Grand-daughter and her husband both work and with all the bills cannot afford the formula (which is relevant in this disease)
The formula is very expensive!…My Grand-daughter and her husband both work and with all the bills cannot afford the formula ...
I have three children, my six-year-old twin daughters Lucy and Lily and my three-year-old son Lucas. Lucy and Lucas were diagnosed at ...
Canaan is a thriving, active 2-year-old boy with a rare metabolic condition called VLCAD. He lives with his parents in Georgia. He was ...
We have three beautiful children, two of which have PKU. We spend over $120 a month on medical formula, foods, and medication for PKU. ...
Coverage for medical nutrition would be a huge blessing to me and my family, and also many other individuals with PKU especially ...
Abbey is such an awesome person. She has a heart of gold, great listener and works so hard at everything she does. She loves to dance ...
When my son, Draegen, was younger, he was on Medicaid. It covered his formula, but only a very specific kind. He ended up burnt out on ...
Prior to switching to my husbands employer benefits we paid $125 per month out of pocket for our daughters formula. When my husband ...
When I learned that Medicaid might not pay for my formula and supplies, I was fearful. It would be unaffordable to me to live while ...
Jane’s formula cost out of pocket for EEN was approximately $300 per month. Her team of health care providers attempted to obtain insurance coverage but was denied even after appeals were attempted.
Jane is a happy and energetic 7-year-old child who lives with her parents and two siblings in Chicago, IL. She was diagnosed with ...
It is extremely difficult to provide my child with enough food to keep him healthy by keeping his blood phenylalanine levels at recommended levels and also keep him from being hungry.
We are a low income family. I am a single mother and I provide school with low protein lunches 5 days a week. It is extremely ...
When patients' mental health deteriorates because they cannot follow their diet, they often lose their job and get incredibly frustrated with the system.
There are so many patients (especially PKU patients) who would like to improve their health status, including mental health, but ...
My story is a sad one. I am a parent of a PKU individual. My son was born June 17, 1985, diagnosed with PKU at 3 weeks of age. He was ...
Lincoln was diagnosed with a severe milk protein allergy at 2 weeks of age after blood was visibly seen in his stool. His pediatrician ...
Diego is a happy and thriving 9-year-old boy from Chicago, IL with a history of intestinal atresia. This means that part of his ...
Hi, I’m Jack and I’m 23 years old, still on my parent’s insurance. This is the first year my formula has been ...