Mark Neilson is Reymark's three year old cousin. When we first met Mark Neilson when he visited his grandma in Sagay, he was having 20-30 seizures a day. His medication wasn't working to control them, or so we thought. Mark Nielson needed to go back for a followup with the Pediatric Neurologist, but his parents had not yet saved up the money needed to see this private doctor and getting in to see the free government neurologist at the public hospital is just....well we won't go there. That's another rant for another day.
We found out that Mark Neilson had seen the same doctor we had taken Reymart to previously. So, we made the trip to the mainland to meet Mark Neilson and his parents and took him to the pediatric neurologist that he had prescribed the medication he was currently taking but wasn't working or so we thought.
The doctor informed us that the medication was indeed working because Mark Neilson was having 40-50 seizures a day when he first saw him. The medication had indeed cut the number in half, but this was still not acceptable especially for a child this young.
When we asked what else could be done, the doctor said that Mark Neilson was already taking the highest dosage of the medication allowed. He also mentioned that he had suggested to the parents that Mark Neilson needed some additional testing and brain scans. All of which cost way too much money and could only be done at a private hospital. If the followup appointments were too expensive, then the tests and scans were way too far out of their reach. Mark Neilson's parents had decided to just be thankful for the 20-30 seizures a day versus the 40-50 he had been having. This was NOT ACCEPTABLE TO ME!
Thanks to our benefactors and sponsors we were able to help him get several tests run including the brain scan the next day! During the scan, it was found that Mark Neilson had numerous spots on his brain. The scan was sent off to be read by a specialist on another island. We then pleaded on FB for prayers for Mark Neilson. The good news is that these spots are NOT TUMORS and are NOT CANCER! The bad news is that they are damaged spots which are causing the seizures and will do so for the rest of his life without a miracle from God. (Which we are still praying for!)
The even better news is that after several months and several different medication trials Mark Neilson is down to only 1 or 2 seizures every few days!!!!!! This is HUGE for him and his family! Thank you, JESUS!
The doctor informed us that the medication was indeed working because Mark Neilson was having 40-50 seizures a day when he first saw him. The medication had indeed cut the number in half, but this was still not acceptable especially for a child this young.
When we asked what else could be done, the doctor said that Mark Neilson was already taking the highest dosage of the medication allowed. He also mentioned that he had suggested to the parents that Mark Neilson needed some additional testing and brain scans. All of which cost way too much money and could only be done at a private hospital. If the followup appointments were too expensive, then the tests and scans were way too far out of their reach. Mark Neilson's parents had decided to just be thankful for the 20-30 seizures a day versus the 40-50 he had been having. This was NOT ACCEPTABLE TO ME!
Thanks to our benefactors and sponsors we were able to help him get several tests run including the brain scan the next day! During the scan, it was found that Mark Neilson had numerous spots on his brain. The scan was sent off to be read by a specialist on another island. We then pleaded on FB for prayers for Mark Neilson. The good news is that these spots are NOT TUMORS and are NOT CANCER! The bad news is that they are damaged spots which are causing the seizures and will do so for the rest of his life without a miracle from God. (Which we are still praying for!)
The even better news is that after several months and several different medication trials Mark Neilson is down to only 1 or 2 seizures every few days!!!!!! This is HUGE for him and his family! Thank you, JESUS!
The bad news is that this new medicine was prescribed as a "last resort" due to the its extremely high cost. The doctor had been holding off on trying this one even though he thought this would be the correct one, because he knew that the family would never be able to afford it if it did indeed work. But in seeing that we weren't going to stop until we helped this precious boy, he prescribed it and it WORKED!
The total cost of one month's supply is over $250. This is unattainable for this family. Both of Mark Neilson's parents work hard to provide for their family of five, and they even have a relative caring for Mark Nielson for free while they are working. But this is more than they make in a month with two full time jobs.
I have talked with the doctor and with several others including the pharmacy about the cost of this medication, the need for it, and the lack of help for the poor. There is no government support at all. No prescription program. No handouts. No discounts. Nothing! Poor families have to find another way, do without, or settle for less expensive medications that do not work as well or at all. This is the injustice that the poor are served everyday. This is what breaks my heart everyday in missions.
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| Mark Neilson, Lilay, and Reymark after one of their neurology checkups. |
If you feel called/inspired/lead to help us help Mark Neilson, continue to remain almost seizure free. You can donate towards his medication and followup visits at the online here, note in the comment box "Mark Neilson". Or mail a check or money order to Family Missions Company, 12624 Everglade Road, Abbeville, LA 70510. Please note "TMS: Mark Neilson" on the check.
