Our employer sponsored healthcare does not cover any of the cost related to my son’s metabolic formula. Because of the cost we ...
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 ...
My FPIES son could only tolerate 1 food (Quinoa) for 3 years without projectile vomiting or having hospitalization level diarrhea. We ...
Nora was born tox positive to several drugs and social services moved her to my home to be with her bio sibling for adoption. She ...
Medical nutrition coverage would mean FREEDOM. Freedom from worry and the freedom to be able to make normal life choices such as what ...
I have phenylketonuria and am required to eat low protein foods and drink a formula supplement daily FOR LIFE. Without these items I ...
My son’s food allergies were so severe, he was reacting to the food I was eating through breastfeeding. He had blood in his ...
I have two sons and only Leo has PKU. We maintain a low protein diet for Leo, but due to the high cost of low protein medical foods, ...
Having medical nutrition coverage would mean that I get to live my life without worrying. I’ve had to move to different states ...
Coverage for medical foods would mean everything.
Coverage for medical foods would mean everything. We could pay our bills and not live paycheck to paycheck. Blended food is not ...
Our BCBS does cover the Medical Formula for my daughter and does reimburse for low protein modified foods but this is never without a ...
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, ...
My husband has been trapped at that job his entire career because of the formula coverage for our son, that we can't afford to walk away from. We have 3.5 years before he ages out of coverage. It is $24,000/yr, for life. The one formula that works for him is not covered by medicaid in our state. We are almost retirement age and plan to work as long as we can to pay for formula.
Our 22 year old son is about to age out of coverage for his formula. He is allergic to everything, except this one formula and ...
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 ...
I was born with CPKU as well as my twin sister. We will die with CPKU too unfortunately. It isn’t anything you have a chance of ...
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 ...
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 ...
We have 2 kids with PKU, so having coverage for medical nutrition would mean the world to us. My husband switched jobs for better ...
We spend every day planning and preparing. Not only what our daughter will eat today and in the week ahead but also for her future. ...
Our family is currently affected by having to pay out-of-pocket for medically necessary formula (Elecare, Jr) for our now 7-year-old ...
Xander was diagnosed with MSUD at 4 days of life. We were in a hospital that did not know how to treat, was not prepared to treat, and ...
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 ...
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 ...
Coverage for medical nutrition would be a huge blessing to me and my family, and also many other individuals with PKU especially ...
Having coverage would make sure that my baby will always have the food and formula she needs throughout her life to have a healthy ...