The Roth Family

Brooklyn ended up making her entrance into this world 6 weeks early and has been fighting battle after battle since. When Brooklyn was about 9 months old it became very clear that I no longer could work from home (this was at the beginning of the covid epidemic) and she needed more attention and help than the average baby. So, as a single mother I had to quit my job to care for her. Not many places of employment can understand that your child has all these doctors' appointments and therapist appointments weekly, sometimes daily, and are willing to hire you because you can't promise your availability. Brooklyn was born with polycystic kidney disease, atrophic kidney, polyuria I thought that was going to be hard to handle.  I could never imagine what the next four years were going to bring us. The first 12 months were spent more in hospitals, Doctors appointments, and early intervention therapies then ever at home.  Brooklyn now only has one kidney, and requires ultrasounds, bloodwork and checkups usually every three months. Since birth we have had to travel back and forth to Children’s Hospital of Pittsburgh 110 miles from our home. She also has been diagnosed with chronic idiopathic urticaria, which needs to be followed by an Allergist in Pittsburgh, Abnormal weight gain and excessive thirst which endocrinology at Children's Hospital of Pittsburgh has been following her since 9 months old because a child that does not consume anywhere close to 1200 calories a day maybe 600 on a good day, never had chocolate, cake, candy anything with high sugars or salt, weighs 75.3lbs at the age of 4 and yet we have no answers to why. We have recently added on a specialist with Hepatology due to elevated liver enzymes, a Neurologist due to absent seizures and development delay who also works with the child development unit at Children's Hospital of Pittsburgh because with autism many children face behavior issues that can become dangerous to one's self and in Brooklyn's case that’s exactly it, a cardiologist due to high blood pressure (which I learned could be because her kidney is not working properly), also have Ear Nose and Throat specialist out of Children's Hospital of Pittsburgh due to many sickness and heavy breathing and now suspect sleep apnea,  even after having her tonsils and adenoids removed already, and finally we are following genetics at Childrens Hospital of Pittsburgh in hopes they can help find a link to all these problems.  She has also been diagnosed with Global Developmental delay, her genetic test showed variants of the Chilton Okur-Chung neuro-developmental disorder, acid reflux, and insomnia. All of this has led us to have nine specialist doctors plus a PCP for her. As you can imagine this has put a strain on our lives not only mentally but physically and financially. 

As a single mother with no support, I lost everything we had at one time including a roof over our head and my job due to all of Brooklyn's medical needs, I have nowhere else to turn.  We are struggling to make it to doctors' appointments due to not having a vehicle because like everything else I could not afford to fix it and the apartment we were able to move into is in a rural area with strict rules, a non-running car was not allowed to sit in the parking lot.  With limited medical transportation and public transportation, it has been extremely difficult to make it to these appointments unless I rent a car. That takes away from our bills including rent, electric, phone, and the daily necessities we need.  I've learned to cut costs where I can by washing clothes in the bathtub and hang drying them, to showering less often to conserve the soap and shampoo for the kids.  In the last 2 years we have basically lost everything. Our home, our car, our friends, and most of our belongings. We became homeless on November 29, 2021. We had no permeant place to sleep for over 5 months, and because I had barely any income at the time and no place to store our belongings, we lost about 75% of our stuff. We are now in our new home located in Lake City PA. I thank God every day to have a roof over our heads and a place to call our own. The downside is this subsidized housing is in a very rural area.  Walmart will not deliver to our area and Insta-cart charges around 25.00 after all the fees to deliver to our area, and for me to walk to the nearest grocery store it is about an hour. The amount of income we do get in truly leaves us with the only option of medical care or house hold bills and expenses there is never enough to cover both.