Joshie fights SB- his 11th surgery.

https://m.youtube.com/watch?v=RTI3IAXQi6c ‌




this is so hard to write,,, but what do you do in life when you have hit rock bottom?  We need help. We are a God-fearing family of 6 and We are in the midst of one of he hardest periods of our life. We know God is in control and we know he will get us through this somehow, but right now we are scared and stressed and struggling. We are facing the biggest hurdle in our 11 year marriage with 4 kids.  

I am 34 with a chronic disease and illness, on sometimes 25 meds per day, weekly injections, and monthly infusions. I live my life in chronic daily pain and on a good day my pain is a 5/10.

As a result of my disease progression as well as multiple health issues with my disabled, paraplegic son I had to leave my job of 11 years last September. That devastated us financially but We had no other option for my health and for the care of Josh (a 6 yr with Spina Bifida) 

We continued paying for cobra health insurance to get us through the year and then there was a huge problem with a payment that didn't go through and everything after September was NOT covered by cobra (Aetna). Doctors and hospitals are coming after us. 

Our 6 yr old son Has Spina Bifida and loads of health problems. He  had his 11th surgery in Oct 2016, this one was brain surgery and then was hospitalized for a kidney infection In February. The surgery was apparently rejected afterwards by Aetna. His leg braces, AFOs, that protect him from pressure sores when crawling, were also denied. All of these companies and doctors, including our specialists, Are coming after us. 

Then as if we didn't have enough going on... a mother's worst nightmare happened to our family a year ago. Through an investigator and attorney for the state of California, we found out our other son, Evan (2 at the time) was abused by his daycare provider in Eastvale (Haldane Family Day Care). You can find the report in community care licensing but it is horrific to read.
Here I was driving an hour every day to work, in extreme pain , while the woman I trusted was hurting my baby.  my son was being starved, hit, locked in a dark naughty room, forced to lay on a hard floor, restricted from playing and had feces rubbed in his clothes when he had an "accident" in his diaper. He was called every bad name in the book (words a child should never hear) and he and 9 other kids shared a 99 cent store frozen meal for lunch each day. ONE MEAL between 9 KIDS. The daycare has been shut down and the woman has disappeared.  We hired an attorney along with other moms and the investigator cannot locate her anywhere. Evan (now 4) has suffered extreme emotional distress. He is not the same. He is significantly speech delayed, terrified of going to the bathroom, scared of the dark, impossible to console and ANGRY at adults. He needs therapy which we can't afford. 

We are broke. We have drained our savings paying medical bills, stopped contributing to our 401k, taken out 2 bank loans, cancelled our TV, got rid of my horse (the one thing in my life that reduced my stress was riding), reduced or cancelled anything we can think of and have basically stopped living, no trips to the zoo, no Disneyland, no vacations, nothing extra. We have accepted that that is our life and that's okay. I have sold as much as I can think of in order to afford some "extras" like Christmas presents, a small birthday gathering for Evan and summer clothes for the kids.

Some weeks we have $50 for food for a family of 6 to last us until the next pay period. I'm suppose to eat a special autoimmune diet of gluten-free, starch free and dairy free Meals to help with my pain but It's impossible to afford so I live off steamed veggies, eggs and chicken.

We have applied for everything for our son ,Josh and have been denied- medi-cal, regional center, SSI, you name it. 

We need help to live. Every doctors visit is expensive. I am suppose to see a pain specialist twice a week which I can't afford. We have debt collectors calling us daily. We don't have the extra money to buy Josh new shoes to fit over his braces, while his current ones are falling apart. We appreciate any help financially or through prayers and sharing during this hard time. We need to pay off hospital bills from his surgery, his braces, specialist visits and ER visits from the last 3 months of 2016. Our credit has dropped and we have maxed out cards and no available balance for emergencies. We just need help. Please pray for our family. Pray That the Lord protects Joshua while he fights this progressive disability, pray for healing for Evan and pray for healing for me. 

Our son, Joshua, is almost 7 and was born with a severe and permanent disabling birth defect called Spina bifida. When he was born his spinal nerves and membrane were on the outside of his back due to his neural tube not forming completely, and he suffered severe nerve damage. He had his first surgery to close his back at 24 hours old. Unfortunately, Spina Bifida is a packaged deal. With it he also has hydrocephalus (water on the brain) for which he had shunt surgery at 3 weeks old,  neurogenic bowel and Bladder meaning he cannot function on his own (we have to give him an enema through his belly button each night and cath him every 4 hrs or we risk a kidney infection ), and several other issues (speech delay, gross and fine motor delays, orthopedic issues) and he is partially paralyzed from the waist down and uses a wheelchair for mobility. He has had surgeries on his spinal cord, brain, several on his stomach, a MRSA abscess surgery that could have taken his life in 2013,  a tumor removed, shunt revision and many others. He has continuous open pressure sores that ulcerated and are impossible to heal because he "bunny hops" while he crawls and drags his ankle across the floor.

We have tried for sooo long to make this journey on our own but it is so extremely hard to raise a child with special needs.  His condition will not improve and will only worsen as he gets older. We have been told that he has a life expectancy of 40-50 years. He requires constant and daily medical care.  

We never thought we would be the people that would have to ask for help. We both work full time and we try to live very responsible lives with our four children. We try to be faithful servants of the Lord and an example for our kids. BUT Having a child with Spina Bifida or any special needs for that matter is so expensive. Adding on my health issues and now the struggles with Evan has finally pushed us over the ledge.. So here we are asking by the Grace of God for help.  If you can and feel like helping please know that we are so grateful and appreciative from the bottom of our hearts. Any help we receive to get us out of this hole we are in would be a blessing! Much love and God Bless! The Niemann Family