W. Family

“Our son’s care is still challenging; he still has all of the same health conditions and risks as he did two years ago.  However, it all seems to be so much more manageable thanks to Medicaid and the waiver. “

Our son was born with an ultra rare genetic mutation and he is one of only 6 children in the world with his genetic syndrome, which doesn’t even have a name yet.   Besides living in a hospital and fighting to keep our child alive, our first couple of years of his life were filled with financial devastation due to medical expenses.  We meet our deductible and family out of pocket maximum within 1-2 months of our plan renewing every year.  Then there are many expenses not covered by insurance such as sleep studies, prescriptions, and therapies which added another several thousand dollars of expenses onto our premiums, copays, deductible and maximum out of pocket.  When you care for a medically fragile child, things rarely calm down.  I saw an old note from 2014 documenting that in that year we had 56 doctors’ appointments, 2 hospital stays, 4 surgeries, 8 ER visits, 1 sleep study, 1 CT scan, 1 MRI, 32 therapy appointments outside of the home and another 73 therapy appointments in our home.  We traveled a total of 4,840 medical miles.  This is honestly an average year for us.  It only took living this life for 3 years to see how quickly we would lose our home, take out bankruptcy and lose everything we worked so hard for.  We were already behind on many bills, had more expenses and medical bills than income, charged almost $10,000 onto our credit card for living expenses and prescriptions, and did not see an end to this trend.  My husband and I both have college degrees and post-graduate degrees, and both of us work in professional careers.  Even so, we could not afford the costs of caring for a medically complex child.  Emotionally things were challenging as well.  Due to his fragile state, we could not leave our son with anyone but a well-trained RN.  This meant that in 4 years my husband and I had been on only two very short dates.  We did not qualify for any respite or nursing care.  Furthermore, we could not afford to have any more children.  Our child may not live a long life and due to the genetic nature of his syndrome we needed to adopt.  Since we could not afford to live, here was no way we could save for an adoption.  We felt hopeless.

In November 2015 our family experienced one of the greatest blessings—our son was accepted onto the Medically Complex Child Waiver here in Utah.  It literally changed everything.  In just a year and a half of being on the waiver, we have been able to pay off all of our medical debt and credit card debt.  We are caught up on our bills and feel comfortable again.  We were able to afford to grow our family and are currently expecting a baby girl in June thanks to the miracle of invitro and donor embryo adoption.  We no longer lose sleep or become physically ill over the financial aspects of caring for our son.  We also have 3 hours a week of respite, which we typically use so I can work outside of the home.  I was able to get a new job, which I absolutely love and has done so much good for my mental health.  By using our nursing hours for my work we can use nurse friends and close family members to care for our son while we go on dates and spend time together as a couple.  We finally feel comfortable and excited to talk about the future again.  Our son’s care is still challenging; he still has all of the same health conditions and risks as he did two years ago.  However, it all seems to be so much more manageable thanks to Medicaid and the waiver.  I can honestly say this waiver changed our lives and saved our family. 

Absolutely anyone can give birth to a medically fragile child.  This type of financial burden and devastation could happen to anybody in our situation.  All we are trying to do is care for the special child God gave us.  We did not ask for this challenging life and we certainly don’t expect handouts.  We just need some help to keep our family afloat and keep our child alive.  Please do all you can to continue funding for Medicaid for medically fragile families!  Without it children and families will truly suffer.  Children lose medications, therapies, services, and necessary procedures.  Parents lose their homes, jobs, raises, and mental health.  We need to continue care for our most vulnerable populations.