Help Gabriel's Health and Happiness
Donation protected
We are very private people and it takes alot for us to ask for help.... But we need it.
We are Amanda and Joshua Bordner and we have a son with special needs. His name is Gabriel. (our angel) He has a terminal condition called Hydranencephaly... Its is a miracle for him to be alive as he is currently living with little to no brain tissue. He was not suppose to live past a few days according to science but he is 6 and thriving with us!
Now the part that we need help with:
When he came to us this summer he was in horrible condition, he had been neglected and was struggling for his life (more so than his every day struggle). We thought every day was going to be his last.....
He was lifeless, contracted up, and barely able to show us even a little smile.... His body was covered in gross dirt and dry skin, his Mic-key button was severely infected and our little angel was not able to tolerate his feedings. He dewendled down to half of his body weight while he was away from us.
He came with no medical equipment, just a syringe and some forumla, and these arm splits to force his arms from contracting all the way up.
After just a week of playing with Gabriel and bathing him, trimming his hair that was matted, his life started to come back... His arms started to relax, and his smile
lite up the room.
(Gabriel at his sisters baseball game, hanging out on his bean bag chair)
( Working on getting those hands open and stretched out with his relaxing lights)
His button infection was starting to heal with the treatments we gave him...He tolerated his feedings via a feeding pump at a slow slow rate of 45ml per hour, instead of the forced bolus he was previously getting.
(he is currently tolerating 80ml/hr... and it takes us around 10-12 hours a day to get him the calories he requires)
We got a pulse oximeter to monitor his heart rate and oxygen and found that his oxygen level was so low that he required oxygen at all times, especially when he sleeps... So we ordered and put oxygen in our home for him.
It took us a while to get the medical records to "continue his care". Once we finally got the medical records sent to us, we found that he had not been to the doctor in over a year, and was just taken to specialist the week prior to him being brought to us. Nobody was following his care until recently and he had been in this condition since feburary of 2015 >.<.... He even had surgery the same day he was placed in a car for 20 hours..... Though we were told the whole time that was was just fussy and not feeling well.
We immediatly contacted the DCS in the state he was previously living, and our state to find out how and why this was happening to our little angel. DCS is currently investigating the situation for Medical Negelct and has a "plan of care" to keep him in here with us to continue his care until he is medically stable and able to travel unassisted.
We are trying to get legal representation to keep him he permantly so that he never has to struggle like this again, at the same time we are paying for all medical equipment, doctors visits, surgery, formula..etc out of pocket.
His biological "mom" is currently collecting his social security and has canceled our attempts to get him insurance in our state. She refused to loose the paycheck saying it is her right to his money because she is his mother and has custody of the child...eventhough the benifits should legally follow the child...and the child is with us.
So we wil continue to pay for these things out of our pocket. My husband is currently working 70+ hours a week, and I work weekends when he is at home with Gabriel, as we can not afford Home care or daycare. Turnstone cost 170 a week... and without insurance no home health care is willing to come and give us respite hours..
His current chubby belly with no infection!
The smile that lights up our world....
Even 1 dollar will help us...Thank you in advance for your time in reading this.... and for your gratitude in helping us through this time.
Everything you do for someone else, will come back to you 10 fold.....we will be forever greatful to you and your family.
We are Amanda and Joshua Bordner and we have a son with special needs. His name is Gabriel. (our angel) He has a terminal condition called Hydranencephaly... Its is a miracle for him to be alive as he is currently living with little to no brain tissue. He was not suppose to live past a few days according to science but he is 6 and thriving with us!
Now the part that we need help with:
When he came to us this summer he was in horrible condition, he had been neglected and was struggling for his life (more so than his every day struggle). We thought every day was going to be his last.....
He was lifeless, contracted up, and barely able to show us even a little smile.... His body was covered in gross dirt and dry skin, his Mic-key button was severely infected and our little angel was not able to tolerate his feedings. He dewendled down to half of his body weight while he was away from us.He came with no medical equipment, just a syringe and some forumla, and these arm splits to force his arms from contracting all the way up. After just a week of playing with Gabriel and bathing him, trimming his hair that was matted, his life started to come back... His arms started to relax, and his smile
lite up the room.
(Gabriel at his sisters baseball game, hanging out on his bean bag chair)( Working on getting those hands open and stretched out with his relaxing lights) His button infection was starting to heal with the treatments we gave him...He tolerated his feedings via a feeding pump at a slow slow rate of 45ml per hour, instead of the forced bolus he was previously getting.
(he is currently tolerating 80ml/hr... and it takes us around 10-12 hours a day to get him the calories he requires)
We got a pulse oximeter to monitor his heart rate and oxygen and found that his oxygen level was so low that he required oxygen at all times, especially when he sleeps... So we ordered and put oxygen in our home for him.
It took us a while to get the medical records to "continue his care". Once we finally got the medical records sent to us, we found that he had not been to the doctor in over a year, and was just taken to specialist the week prior to him being brought to us. Nobody was following his care until recently and he had been in this condition since feburary of 2015 >.<.... He even had surgery the same day he was placed in a car for 20 hours..... Though we were told the whole time that was was just fussy and not feeling well.
We immediatly contacted the DCS in the state he was previously living, and our state to find out how and why this was happening to our little angel. DCS is currently investigating the situation for Medical Negelct and has a "plan of care" to keep him in here with us to continue his care until he is medically stable and able to travel unassisted.
We are trying to get legal representation to keep him he permantly so that he never has to struggle like this again, at the same time we are paying for all medical equipment, doctors visits, surgery, formula..etc out of pocket.
His biological "mom" is currently collecting his social security and has canceled our attempts to get him insurance in our state. She refused to loose the paycheck saying it is her right to his money because she is his mother and has custody of the child...eventhough the benifits should legally follow the child...and the child is with us.
So we wil continue to pay for these things out of our pocket. My husband is currently working 70+ hours a week, and I work weekends when he is at home with Gabriel, as we can not afford Home care or daycare. Turnstone cost 170 a week... and without insurance no home health care is willing to come and give us respite hours..
His current chubby belly with no infection!
The smile that lights up our world....
Even 1 dollar will help us...Thank you in advance for your time in reading this.... and for your gratitude in helping us through this time.
Everything you do for someone else, will come back to you 10 fold.....we will be forever greatful to you and your family.
Organizer
Amanda Bordner
Organizer
Fort Wayne, IN