Children without access to formula and medical food struggle to keep their levels stable and deal with a myriad of issues from attention issues to brain damage.
Right now my husband and I are financially stable and we can afford the almost $100 per month we spend on medical formula and the ...
The average child eats what everyone else eats and thrives based upon a combination of nutrition, exercise and genetics. While we can ...
Medicare always denying coverage, constant. Medicare is very poor. EOB’s need improvements. I have a son that needs medical ...
We reside in Kansas. Our son Jackson was born June 12, 2012, 5 days later the State of Kansas called with positive results for PKU ...
Coverage for medical nutrition would be a huge blessing to me and my family, and also many other individuals with PKU especially ...
We are fortunate that in the State of Ohio our daughter’s medical formula is covered. Because she is a responder to Kuvan, we ...
The metabolic disorder itself is such a challenge in learning and dealing with and then to have to worry about the funds to get the food, formula and medical care she needs is another level of added stress.
My daughter was diagnosed with PKU at one week old. The moment that doctor called us it changed our lives forever. The metabolic ...
My son was a week old when we got the news that he has PKU. I had no clue what this was and didn’t realize just how serious it ...
Louie was diagnosed when he was one week old. We were told to expect motor delays, intellectual disability, and vision loss, assuming ...
My mother has worked as many as 5 jobs concurrently to maintain employer-provided insurance and has CONSTANTLY fought to keep me on a ...
My daughter was diagnosed with a genetic inborn error of protein metabolism at 15 months of age. Since that time, our daily life has ...
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 ...
Medically necessary formula has given Caleb back his health, allowed him to continue to advance in sports and school. Not knowing if ...
Having medical food coverage would expand our daughter's ability to try new and different foods. Her diet is supervised by a metabolic team of healthcare professionals at a specialized genetics/metabolism clinic in our state. This is not just for fun or because she wants to eat a certain way, This is to help her grow and develop properly.
Having medical food coverage would expand our daughter’s ability to try new and different foods. Medical foods such as rice, ...
We are extremely lucky to have identical twins that can share the trials and tribulations that come along with having PKU, but the ...
My daughter, Lyndsee, was diagnosed in January 2016 with a rare disease, eosinophilic esophagitis. Therefore, she has to live on a ...
We have two beautiful daughters, Hattie (20 months old) and Maxine (6 months old) who were diagnosed with PKU at birth. Because of ...
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 ...
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 coverage for our family will mean less time fighting the insurance for coverage. They decide when and how they are going to ...
Earlier this year we experienced what not being able to afford formula & medications or have no insurance coverage is like for so ...
Our daughter has even told her dad and I that she thinks at this point, she will choose not to have children due to the cost of her medical foods!
Our 25 year old daughter has always done really well with her PKU diet, especially throughout her schooling! We were able to receive ...
It would relieve a lot of stress and tension in our household. Having to pay out of pocket for my son’s formula has brought me to ...
My name is Kelly and I was born on October of 1989. I appeared to be a perfectly healthy baby, the youngest of three, to loving ...
I have two daughters, three years and almost one month. We didn’t have a diagnosis for my oldest for 15 months. Her leg broke ...