When Norah was just 5 days old, we received a call from our clinic saying that Norah had something called PKU. At the time, we had ...
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 ...
Meet Adler! He is an amazing little boy that lives in rural Missouri with his Mom and Dad. Adler was diagnosed with PKU shortly after ...
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 ...
Our oldest daughter Stephanie was born with PKU. The costs for her food and supplies is very costly! We as parents do what we can do ...
Colton is almost 7 years old. He was born at 30 weeks and lost 2/3 of his small bowel due to a mid-gut volvulus. He has been on an ...
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 ...
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 ...
Having a child with PKU is extremely time consuming! I am always preparing special food for him and making sure he has what he needs ...
Louie was diagnosed when he was one week old. We were told to expect motor delays, intellectual disability, and vision loss, assuming ...
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 ...
Earlier this year we took custody of our grandson Anthony. He was diagnosed after birth with PKU. He has lived with us since birth, ...
So far Mark's medical nutrition has been covered after the out of pocket maximum is met (this year it is $7,450). But we never know year after year if it will be or not and January is always stressful not knowing if will be or not.
So far Mark’s medical nutrition has been covered after the out of pocket maximum is met (this year it is $7,450). But we never ...
I am one of the oldest patients in the PNW. My parents were told to put me in an institution but they said no and found a pediatrician that put me in the first clinical trial for treatment of PKU.
Hello, I am a 50 year old Phenylketonuria patient at the UW Medical Center. I am one of the oldest patients in the PNW. My parents ...
My son was hospitalized at 7 weeks old due to a reaction. At the time it was determined the common cold sent him into near shock. He ...
Our clinic's desire to bring the best possible care and outcomes to our patients is directly related to their ability to get necessary medical foods. Many who are not able to get medical foods are not able to follow their restricted diets, leading to poor outcomes and disease associated morbidities.
Medical food practice affects our practice in several ways. First, and foremost, our desire to bring the best possible care and ...
Our employer sponsored healthcare does not cover any of the cost related to my son’s metabolic formula. Because of the cost we ...
When our daughter was born, our two employer-provided insurances refused to cover her condition.
When our daughter was born, our two employer-provided insurances refused to cover her condition. One insurance was through the Ct. ...
Medical nutrition coverage would make an enormous difference to our entire family. We spent years in school to provide a good living ...
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 ...
Marcella was diagnosed with multiple food allergies in 2016. She is allergic to soy, peanuts, tree nuts,fish, shellfish, along with a ...
Our daughter Callaway requires specialized formula every single day to stay alive!! While our insurance covers a portion of the ...
Meet Hailey…our second child and first PKUer. We thought having one child was expensive but having another with PKU is an ...
Elliott was diagnosed with Homocystinuria, or HCU, at 2 years old after suffering a series of blood clots throughout the brain. Once ...
As all parents who experience it, we were overwhelmed once we got the call, at 5 days of age, that our daughter Maeve had been ...