Jacobs medical support
Donation protected
On May 31st around 2:00 a.m. I heard noises coming from another room. I got out of bed.
I found my 9-year-old son lying on our bathroom floor. He was using his right foot and pounding on the toilet. He was face down with his left arm in a horrible position. I began to call his name and asked him to get up, thinking he was having a bad dream or something.
I started to rub his back because it seemed he was in a dream or something and I couldn't understand what his responses were. He was mumbling and I couldn't make anything out. I then became more persistent and said "Jacob let's get up and go to bed". He yelled "I CAN'T". He was able to get that out.
I scooped him up and immediately felt his left arm had no response of feeling. Same with the side of his face and he could not stand as his left leg gave out. I yelled to my wife "we need to get him to the hospital". I placed my son in the back of our vehicle, my wife sat with him until we made it to the emergency room.
They thought a seizure, which he never had before. They said an ambulance from Cleveland Rainbow babies Children's hospital was coming for him. My wife went and I followed. I got there and they were already in MRI and I was notified it was a clot in his brain and he had a stroke. I had to sign some papers that no parent should have to sign.
They performed surgery immediately and removed it. A miracle. Jacobs’s brain is recovering and he is able to use his legs and walk and he is able to use his left arm. Little difficulty, but he is improving.
The next steps were to see what caused the clot, we found out his heart is enlarged and he has a rare affliction called restrictive cardiomyopathy. It is fatal unless he receives a heart transplant. I'm so scared. I want to help my son. I want to fix him, and I want him healthy. I am crying right now.
Every night is the same, I am at the hospital till 12:30 a.m. or so and return home to take care of Daisy, his dog and get some sleep. My wife will not leave the hospital. An hour and a half from now will be a full week since this happened. This is the most pain I have ever experienced, but it is nothing compared to what my son is dealing with.
I am trying to be strong for him and it is so hard. I just cry and find the words to ease his mind, but it’s hard. He is so bright and tries to rationalize what he understands about this, but keeps saying he wants to come home. He misses his home, room and his dog Daisy.
He is constantly poked with needles and I pray all of this would just go back to the way things were. We never knew he had any issue. Not a single Doctor, Nurse or Physician ever noticed anything out of the ordinary over 9 years. He played baseball and scored the tying run that morning. We had his favorite ice cream after the game and went on errands.
That evening my wife and him watched Jurassic Park 1 and 2 while I studied in the computer room. They also watched a documentary about how elephants were mistreated at the Circus. After the show he came in around 10 p.m. Saturday night before bed and told me all about it. He went to bed and later that morning it happened.
My family never expected to be in this position and we are desperate. The social worker at our hospital along with a friend suggested we begin a gofundme account, simply because the medical expenses are astronomical. The insurance we have covers only so much and my wife will need to stay home and care for our son. She is an amazing person and has sacrificed so much for our son without a second thought. Now her portion of family income is sacrificed and we have no idea how we are going to get by. My income will have to suffice, and with the medical expenses already accumulating, I am not sure how we are going to do this.
So far Jacob has had a defibrillator implanted and is a 1a urgent level candidate for a heart transplant that will take place within a few months. Hug your children and always say I love you. I am scared of losing my son. He is my pride and joy, my world.
Please help, I don’t know what else to say.
I found my 9-year-old son lying on our bathroom floor. He was using his right foot and pounding on the toilet. He was face down with his left arm in a horrible position. I began to call his name and asked him to get up, thinking he was having a bad dream or something.
I started to rub his back because it seemed he was in a dream or something and I couldn't understand what his responses were. He was mumbling and I couldn't make anything out. I then became more persistent and said "Jacob let's get up and go to bed". He yelled "I CAN'T". He was able to get that out.
I scooped him up and immediately felt his left arm had no response of feeling. Same with the side of his face and he could not stand as his left leg gave out. I yelled to my wife "we need to get him to the hospital". I placed my son in the back of our vehicle, my wife sat with him until we made it to the emergency room.
They thought a seizure, which he never had before. They said an ambulance from Cleveland Rainbow babies Children's hospital was coming for him. My wife went and I followed. I got there and they were already in MRI and I was notified it was a clot in his brain and he had a stroke. I had to sign some papers that no parent should have to sign.
They performed surgery immediately and removed it. A miracle. Jacobs’s brain is recovering and he is able to use his legs and walk and he is able to use his left arm. Little difficulty, but he is improving.
The next steps were to see what caused the clot, we found out his heart is enlarged and he has a rare affliction called restrictive cardiomyopathy. It is fatal unless he receives a heart transplant. I'm so scared. I want to help my son. I want to fix him, and I want him healthy. I am crying right now.
Every night is the same, I am at the hospital till 12:30 a.m. or so and return home to take care of Daisy, his dog and get some sleep. My wife will not leave the hospital. An hour and a half from now will be a full week since this happened. This is the most pain I have ever experienced, but it is nothing compared to what my son is dealing with.
I am trying to be strong for him and it is so hard. I just cry and find the words to ease his mind, but it’s hard. He is so bright and tries to rationalize what he understands about this, but keeps saying he wants to come home. He misses his home, room and his dog Daisy.
He is constantly poked with needles and I pray all of this would just go back to the way things were. We never knew he had any issue. Not a single Doctor, Nurse or Physician ever noticed anything out of the ordinary over 9 years. He played baseball and scored the tying run that morning. We had his favorite ice cream after the game and went on errands.
That evening my wife and him watched Jurassic Park 1 and 2 while I studied in the computer room. They also watched a documentary about how elephants were mistreated at the Circus. After the show he came in around 10 p.m. Saturday night before bed and told me all about it. He went to bed and later that morning it happened.
My family never expected to be in this position and we are desperate. The social worker at our hospital along with a friend suggested we begin a gofundme account, simply because the medical expenses are astronomical. The insurance we have covers only so much and my wife will need to stay home and care for our son. She is an amazing person and has sacrificed so much for our son without a second thought. Now her portion of family income is sacrificed and we have no idea how we are going to get by. My income will have to suffice, and with the medical expenses already accumulating, I am not sure how we are going to do this.
So far Jacob has had a defibrillator implanted and is a 1a urgent level candidate for a heart transplant that will take place within a few months. Hug your children and always say I love you. I am scared of losing my son. He is my pride and joy, my world.
Please help, I don’t know what else to say.
Organizer
Martin Heberling III
Organizer
Amherst, OH