Christian's Rare Brain Disease

My name is Anna Heroldt. I’m 23 yrs. old.  I have a 5 yr. old little girl named winter. I met my husband Landen about a yr. and a half ago. After dating for a short amount of time he proposed. We were married shortly after. A little less than a yr. ago we got pregnant with the little boy I had always wanted. We were overwhelmed. I was very excited but I was also afraid because my father had a rare brain disease called Leukodystrophy. It’s a disease carried through females but only effects males. This meant my baby boy could end up with my father’s disease. For those of you who aren’t familiar with the disease it’s a deterioration of the white matter of the brain. The disease affected my father in many ways. My father was fortunate enough to live a fairly full life. However his life ended in a nursing home bed.  He most likely passed due to an infection. He did not have the ability to fight it because of his disease. We didn’t want to believe it was possible for our son to end up with the same disease my dad died from. Despite our concerns we had a normal pregnancy. There were no complications. On December 13th our beautiful boy, Christian was born. He was beautiful.  We took him home 4 days later. Within a week of being home we noticed his head quivering. Upon closer inspection his eyes were shaking up and down too. I thought to myself oh no...hopefully thats normal... There were other things too. He seemed colicy or like he had some digestion issues. When we took him to his one month appointment i mentioned my concerns about his eyes. They looked and told us that it wasnt normal. They said it was a nastygmus. It usually indicated something wrong with the brain and we should get him into a neurologists. They also said that we should start supplementing him because he was underweight. Shortly after the visit with his doctor i developed other concerns. He would spit up alot and sometimes it would be forceful. These things became less and less concerning so we didnt take him in. We just moved from Wisconsin to Georgia and didnt have insurance.  Then he began to sound congested and developed a bad diaper rash. That was the final straw. We decided to take him to the er. We told them what was going on and they checked him out. They found these things concerning and ran some test. They took blood and decided to give him a CT scan. Nothing showed. Then they decided to do an mri because if it was luekodystrophy it wouldnt show on a CT scan.  To do that we have to be admitted and spend the night. Little Christian went in for his MRI febuary 15 around 6 a.m. We anxiously waited for the results. The doctor came in and showed us the pictures. The pictures confirmed our worst fears. The doctor explained that there was a part in the brain that in pictures should look much lighter. It was his myelin( white matter). He didnt have the anount he should. The doctor explained that what they needed to know next was the cause. They would have to do more test for that. We stayed in the hospital for around 4 days. We needed to get all we could done before we left because we didnt have the insurance. They were able to narrow the type down to two. Forst was canavans. The next was pm luekodystrophy. After the final MRI we ruled out canavans. We were relieved... They had e process of all of this my husband was offered a job in Georgia. We decided as a family that we should take this opportunity. We did not have the money to go. So the money was loaned to us from my brother. We also had to get permission to take my daughter winter to another state. My daughters’ dad objected to the move so we had to obtain an attorney to fight him in court. The whole move alone cost over 7,000 to get out here. On the day of our move we had to go the hospital for Christians’ 1 month checkup. They told us that he had abnormal eye movement.  My husband had a start date for the job so we had to go that day. They told us traveling was ok but we had to go see a doctor shortly upon arrival to Georgia. After 2 weeks of living in a hotel we were blessed with a home to rent. Again we had to get help. Because my husband didn’t get his first check yet.  Shortly after finding the home the same opportunity we had moved out here for my husband was wrongfully terminated from his employment. He had found another job and was supposed to start the following Monday. That Sunday night on Valentine’s Day he had a diaper rash that needed to be looked at. They checked out the rash and also noticed the odd eye movements that Christian had had. They decided to give him a CT scan and keep him over night because they were going to give him an MRI in the morning. After the MRI 3 doctors came in the room with the bad news that our lovable baby boy Christian has the disease leukodystrophy. When found in infants they are unable to walk ever, eventually cannot eat on their own or breathe. They rarely live past 10yrs old. This saddens me to even right about this...because we want to have all the faith and hope in the world. We believe in Jesus and even as hard as it is he has a plan for this, even if it’s at the expense of our sons’ life. We don’t know what the road ahead holds but we know that many challenges wait ahead. He will need items to help out his life style. He will need in home care; he may need many other medical devices as well. We will need help getting to and from the hospital. We currently don’t have insurance. We are trying to acquire it. Financially we need help with the bills. Christian will require a lot of physical therapy. My husband has a new job already. But we need immediate help. His job does not provide insurance. Our medical bills we are well into the 10s of thousands. We want to make sure Christian gets all the best care, n possible treatments. They say there is no cure or anything they can really do except makes his living a little easier. For Christian to have any chance a happy normal life. With God all things are possible. So it would mean so much if you would help because we know he will most likely not have a full life but whatever life he has your help will help him have more options. Thank You and we will keep you all posted God Bless.

                                         The Heroldt Family