Helping Emma one share at a time!

#GoBeyondGiving
I am writting this for my daughter as she is not the kind to ask for much. Their story long so bear with me. My daughter has already been through a lot more in her childhood then most adults adults go through their whole life. After over coming adversity she finally found happiness and married a hard working man of faith. After five miscarriges she was blessed with a son whom she named Ethan. They discovered she had some medical difficulties and required emergency cerclage to hold Ethan in and did 5 months of inverted hospital bed rest. He ended up coming early anyways despite their best measures. He did 2 months and by the age of 18 months was diagnosed with Chrons disease. The first 2 years took there toll and Ethan racked up almost 2 million dollars of debt. With bills pilling and garnishments on his paycheck they filed for bankruptcy. Unlike most people I watched them choose the repayment option which they paid for 5 years never missing a payment. He always said it our debt I just can not pay it all at once. They were blessed with a second boy and knew what to do for my daugter and Eli is a healthy six year old. Shortly after he was born the gas industry changed. He was already driving 6 hours to work and staying there for 2 weeks at a time then coming home. This was when our ressession happened. They prayed alot and it was answered he was able to keep his job at cut back hours which allowed them to keep the insurance coverage they needed from his job. It came at a price the house had to be included in the bankruptcy and since his job would now require Blair to follow the rig they bought a used 30 ft camper and stayed in it for a year. My fiance came down with a ACL and my mother moved in with me after my step father past away. I was struggling with two jobs and trying to take of my family. After them listening to my troubles for some time they decided to move to wv to help me. Her husband Blair flew back and forth for his job while trying to find one closer by. He had to stay several months at a time because it was to expensive to fly back every month. He finally got on a rig job closer to home in PA. He continued to help support both families fixed things around the property. My daughter got pregnant again with no medical intervention the two were fertility babies. Even the doctors were amazed at the fact she had gotten pregnant on her own. The pregnacy was difficult as the last one had taxed her kidneys and created a heart problem. Since this was when he switching companies they had no insurance coverage but their prayers were answered and a high risk ob an hour from home would see her without any payments until their insurance kicked in. Emma came by emergency c section 2 months after in hospital stay. She was born with a cleft palate. They told us nothing else at that time. Early on Emma was having trouble breathing and eatting without chocking. They sought medical help from an ENT clinic. After sitting for 6 hours in an office the 6 specialist came in who happened to be a nutritionist and said "Your daughter is beautiful I see she has Pierre Robin Sequencing how she doing?" My daughter was taken back and asked "she has what?" That was the first time we had a clue to what might be wrong with her. We searched for several pediatricians in our rural area to help Emma. We finally had a referral from the birth to three program. We went and saw Dr Anger in Elkins. She was the first one to look at Emma and knew what was wrong with her. She knew of Dr. Murthy who works for Akron Children's Hospital. She made a referral there. She ended up in hospital several times due failure to thrive and respiratory problems we called the craniofacial clinic and they slotted her an emergency appointment. We drove for 4 hours to get there. We told him about Emma's trouble and confirmed her first diagnoses. He then flipped her on her back and said I could have fixed this months ago. Her toungue was failing in her throat and chicking her airway. The thing that saved Emma is due to the larp she was sleeping on a monitor at night in her belly. He explained when she becomes able to roll over she might die due to airway obstruction. They then scheduled emergency surgery for the following week as it was Friday. We drove home having very little money left one of our friends a shriner offered services to help us. It was hard for my daughter but she excepted as we were looking at having the gas money but no place to stay. It was a huge blessing and they paid for the hotel. Unfountantly Blair insure would only cover so much so much. She had a procedure to place a jaw distracter in between the jaw bones they broke. Due to insurance it was only deminded to only do what was medically necessary. So the breathing tube was removed after surgery which caused her to have strider almost 48 hours after. She had to have emergency intervention to reopen her airway. By the fifth day she was discharged to the hotel where we had to turn the screws on the sides of her head to send the jaw forward milimiters at a time every six hours. I watched her cry and puke it was horrible. The escalator made a horrible clicking noise and the baby would scream. Aftercheck up she went home. Three months later we came back to have it removed and her palates repaired. It took 5 hours of surgery as it ended up being more complicated. She again picked up strider after surgery. When she was released we were happy. She continued to improve and even though the bills were again stacking up they made small payments counted their blessings and were happy for the most part. However in March Emma statted having fevers and a few bouts of pneumonia and ear infections. She had tubes placed a few months before that so they could not figure out why she was having so many. They left for a trip to Michigan to visit her fathers mother who was passing away. They stopped the Great Wolf lodge they had saved money for the kids to have some fun while she visited her grandmother. On the way home Emma started to spike more fevers. The took her in as a precaution because she could not get the fever down. The hospital was getting ready to discharged her and just by chance she picked my grand daughter up and placed her in bed between her and her oldest brother. She fell alseep to the baby rubbing her face. She woke up to the baby having a seizure. She hit her nurse button grabbed her daughter and ran down the hallway because she was turning blue. Emma was unable to breathe. They called the doc up from the ER he ran up there and was unable to get Emma to stop seizing and rapid response was still not there. He ran with my granddaughter down back to ER stating he could no longer wait or he would lose her. He worked on her for awhile and told us it was not good. I found coverage and came to the hospital. He was able to save Emma and called lifeline for the morgantown helicopter. They had to put an IO in her and give several meds to help calm her brain. In Morgantown she went through a battery of tests. They tried to do a spinal tap but they never consulted anyone on her conditions or how to treat her and we trusted them to know. They sedated her in the room after we were asked to leave through an IV push. She was too weak and with her floppy airway she went into respiratory failure. She ended up on CPaP and when she was able to step down they again tried because they wanted to rule out meningitis. So had to do it with no seditive with nurses holding her down. She ended up not having it and after a series of eeg she was cleared for not having epilepsy. Her lung infection final got better and two later they discharged her. 48 hours later she was having seziures again at home and she had to be rushed to the hospital she quit breathing again . The hospital in Morgantown did not want her transfered back claiming it is just febrile seziures. They would see her in clinic later. She was discharged. The next day Emma had almost no movement in her lower legs and was turning purple. We called her pedi doc and she said I dont care where you take her but you stay until they listen to you. We called the shriners again and they were willing to help. So we made the drive back to Akron. She was admitted they did another ct scan a week from the one done in WV and found she had a mass. We learned she needed an MrI. We would have to wait because Emma needed a team to be pit to sleep. We learned her floppy airway required intubation. That WV should have neve put her to sleep they way they did. The MRI confirmed she had Chairi malformation. Emma could no longer swallow anything thinner then honey. She was gonna need another surgery. Taking out some skill bine and vertebrae. The shriners could only pay half the hotel room and when they got up to 900 they new they needed to move. They searched and were unable able to find places in safe neighborhoods. They ended up taking one that was had higher rent. I had recently gotten my second funding so no longer needed help which was a blessing it was easier for them to move. After moving she required an ambulance several times. That was a blessing as well they could get to Emma with 5 minutes where here it took to long. A week before her surgery Blairs company laid off a great deal of workers without notice it was a huge blow. He has been looking for ever since. In the 12 years they have been married I have seen him take 8 days off three of which were births. I have seen him give to people when he had little to spare. I watch them pray for their daughter and now I am watching them struggling to find help to pay for medical bills, a broken car, and a lease they cant afford. The church is helping and they got approved for unemployment whuch starts in July which will help cover a small portion. I want my grandaughter to stay where her brain surgeon is at. I trying to do anything to help them find enough money to fix their car, help pay bills, medical expenses, theraphy, devices and the 6 thousand they owe on the rest of their lease. They can finish their lease and find a place cheaper instead of defaulting and owing all the rent upfront which they do not have. They had already gone through their savings. Emma allone costs them 800 a month just in her special formula and thickners due to her allergies. If you know any one who might be able to help or you can help. It would change their world. He puts in applications and sesrches everyday with nothing. With one set of skills it limits what he can do and my daughter takes care of her kids. I know as often as they pray something is going to come. If you work for a drilling company or know of one that might be hiring he has worked from floors to relief driller. He worked 2 weeks on and off. He is a hard worker and they are just down on their luck. He is looking in the pa oh area the email is [email redacted] Thank you for any help.