We adopted Lisa last year. Prior to that she was in Florida. Due to the low amount covered in Florida Lisa was on a very limited diet. ...
Christopher is a thriving, active 9 year old boy with a rare metabolic condition called LCHADD. He lives with his parents in Atlanta. ...
Our family is unique, in that I have PKU as well as our four adopted sons. With no guarantee of insurance coverage, I fear that my ...
My name is Christy and I am a mother to 2 beautiful kids, both with PKU. My daughter, Rebecca, is 21 on Sunday and my son, Stephen, is ...
Medically necessary formula has given Caleb back his health, allowed him to continue to advance in sports and school. Not knowing if ...
My son just turned one. Just over a year ago, our lives drastically changed when we found out our little guy has PKU. Since he’s ...
When I was eligible for the Affordable Care Act, I “made too much money” since child support is added in for income for DE ...
Our daughter must take a medication twice a day, drink medical formula and eat special medical foods in order to stay healthy. We are extremely lucky that our insurance covers a large portion but so many families are not as lucky as we are. Medical nutrition IS NOT AN OPTION.
When our daughter was diagnosed with an Inherited Metabolic Disorder at 10 days old I remember the frantic whirlwind of calls, emails, ...
Having medical coverage would mean we could have more of a variety of foods for my son instead of relying on the same foods since we ...
These medical foods and formulas are not “optional” or “nice to have” for those of us with PKU andsimilar ...
We adopted our beautiful daughter Zoe three months ago from China. We did extensive research on PKU and prepared ourselves the best we ...
We are self-insured. We have had to change health insurances every year for the past several years because the insurance company went ...
My mother has worked as many as 5 jobs concurrently to maintain employer-provided insurance and has CONSTANTLY fought to keep me on a ...
For our family, the most meaningful part of medical nutrition coverage would be hope and confidence for the future. We have coverage ...
On top of the cost of formula, I have to buy specialty foods amounting to about $200 per month plus regular grocery store items for my son, fresh fruits and vegetables. Plus groceries for rest of family. My son will then age out of coverage per current policies. I worry about what will happen, will he have an occupation that will allow him to manage the cost?
Having better coverage will will certainly lower our costs. To have to pay escalating insurance premiums plus the cost of formula and ...
I recently became ineligible for the Medicaid insurance I was on, I make just a little over the cap for income to be eligible. While I ...
Hi, I’m Pat and this is my son, Isaac, and husband/caregiver, David. Isaac is high functioning Autistic. I’m Type 2 ...
I have two daughters. Only the younger one has PKU. We struggle to find foods that Isabel can eat. Medical foods are incredibly ...
Lincoln was diagnosed with a severe milk protein allergy at 2 weeks of age after blood was visibly seen in his stool. His pediatrician ...
When our firstborn was just 7 days old, we received a call to rush him to the hospital. He had tested positive for PKU. We, including ...
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 ...
My name is Renee. I am recently married in August 2017. I am currently on pre-con trying for our first child. My levels have been ...
Earlier this year we experienced what not being able to afford formula & medications or have no insurance coverage is like for so ...
When Emma was first born my husband worked at Avaya and we had Aetna. They refused to cover her medical formula despite appeals with ...
Insurance covers my daughters medical formula but doesn’t cover her medical foods. If my daughters medical foods were covered it ...