JoJo’s Journey
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Hi everyone I’m starting this fundraiser to try and help with the financial storm I have found myself in due to my sons medical condition and hospitalization.
I also have CA-@Buckeyeash, and PayPal-@MeghanSmith1992
Backstory;
In 12/2020 my 8 year old Son JoJo had a stroke (we didn’t know it at the time he was 6 about to turn 7) that caused his left eye to turn in towards his nose. We took him to the doctor and they ordered an MRI in late February- which was read as clean and no abnormalities. He was then scheduled for eye surgery for 4/1 to correct the muscles in his eyes.
3/19- JoJo started limping on his left side and said his shoe was just too tight but as the weekend progressed he was almost tripping over his own leg to walk. 3/22 he was taken to the emergency room and they sent him home with a leg wrap and said he had a sprained ankle even though JoJo was complaining of severe headaches. 3/23 JoJos nurse from his school called me to let me know that he believes something is very wrong with JoJo as he was now fully dragging his leg and zoning out at school. After speaking with him I immediately took JoJo back to the emergency room where he was admitted for a 3 day stay. They sent him home without doing a repeat MRI like requested from myself and said he has complicated migraines. He was sent to physical therapy and to follow up in 2 weeks.
4/6- JoJo was reevaluated by the neurologist and since there was little to no improvement and with the help and advocation from his therapists at DC that it wasn’t an ankle sprain the doctor agreed to redo his MRI.
4/16- JoJos results for his MRI are in and his doctor calls to tell me that my son suffered a rare stroke in his thalamus and refused to admit him into the hospital and had us bring JoJo in next day since it was an active stroke.
4/17- We met with neurologist and reviewed his imaging and doc still refused to admit JoJo and said everything will be done outpatient ASAP. We decided to just take JoJo to Nationwide Children’s where JoJo was immediately admitted and work up started.
4/17-4/26- JoJo went through multiple studies and NCH received JoJos records around the 21st and confirmed that JoJos 2/25 MRI was in fact not clean and already showed his first stroke that he had in December of 2020 on that MRI.
06/2021- JoJo went in for routine work up since we still could not find the cause of his strokes and he had some kind of episode where he lost temporary function to his legs and started to have urinary accidents. He couldn’t feel that he was peeing. Nothing came back on the stat MRI so JoJo was released after regaining function 2 days later.
07/21- JoJo was sent to Duke university where they did a work up for possible CNS Vasculitis but came back negative.
09/21- JoJo had 2 more strokes in his brain in his Basal Ganglia. Still High WBC and protein in his CSF but no other abnormalities. He was started on high dose 5 day regimen of steroids and released once regaining function again to baseline. Steroids seems to work.
We had a few scares through October but nothing seriously major.
JoJo was almost back to walking without a walker when at the beginning of November he had a urinary episode and started dragging his leg again but MRI and CT came back with no changes. He was given another round of IV steroids then sent home with oral steroids. He was doing great all of November.
11/30/2021… 10:30 at night JoJo and his brother were told to go to bed and JoJo couldn’t stand. We though his leg just fell asleep so we massaged him but no changes. We took JoJo to Dayton Childrens once again because it’s the closest hospital and they immediately transferred JoJo to Nationwide in Columbus.
12/1- JoJo undergoes another Spinal MRI and it shows 2 new lesions on JoJos spinal cord. By this time JoJo had lost all sensation to his legs but still had tone and reflexes. JoJo was immediately started on PLEX and IVIG to get inflammation down but that had little to no change. He was then started on rituxamab and cytoxan to suppress his immune system so the inflammatory cells could stop multiplying.
12/23- JoJo was transferred to PM&R service to start rehab for release from the hospital by 2/8. He still did not have function to his legs so he is now at wheelchair level.
1/7- JoJo underwent another Spinal MRI because of neurological changes and losing tone and reflexes in his legs and paralysis was now up to his nipple line. It was discovered that JoJo suffered another, very large stroke in his spine. From his T/3 all the way to his conus. The largest stroke JoJo has had. The doctors were now confident in saying the 2 lesions from 12/1 were strokes as well.
1/12-1/13- JoJos paralysis is worsening up into is t/4
1/13- JoJo was transferred out of rehab back to the medical floor to undergo more testing.
1/14- today JoJo underwent a spinal angiogram which came back as normal, and will undergo another MRI due to the changes in his paralysis. We haven’t gotten the results of that yet.
JoJo has been in the hospital for 44 days. This is his longest stay and I have not been able to fully recover financially from when this all started. I was on personal leave for a while and when I went back I caught up on most of my bills thanks to donations and my job. I lost my job in October due to my attendance. I did not have FMLA. My boyfriend has helped with most bills as well as my mother but it’s getting harder and harder to stay on top of everything right now. I’m in the hole almost across the board… I cannot lose my place to live, my lights need to stay on, my car payment and my phone payment. I’m not asking for it all to be paid but I’m just asking for a bit of help I cannot work when JoJo is so medically unstable I need to be able to be with him and provide the basic necessities for his older brother and sister.
JoJo has a biopsy and laminectomy coming up that’s going to keep him in the hospital for a while. I just honestly really need help. Anything at this point will help.
I also have CA-@Buckeyeash, and PayPal-@MeghanSmith1992
Backstory;
In 12/2020 my 8 year old Son JoJo had a stroke (we didn’t know it at the time he was 6 about to turn 7) that caused his left eye to turn in towards his nose. We took him to the doctor and they ordered an MRI in late February- which was read as clean and no abnormalities. He was then scheduled for eye surgery for 4/1 to correct the muscles in his eyes.
3/19- JoJo started limping on his left side and said his shoe was just too tight but as the weekend progressed he was almost tripping over his own leg to walk. 3/22 he was taken to the emergency room and they sent him home with a leg wrap and said he had a sprained ankle even though JoJo was complaining of severe headaches. 3/23 JoJos nurse from his school called me to let me know that he believes something is very wrong with JoJo as he was now fully dragging his leg and zoning out at school. After speaking with him I immediately took JoJo back to the emergency room where he was admitted for a 3 day stay. They sent him home without doing a repeat MRI like requested from myself and said he has complicated migraines. He was sent to physical therapy and to follow up in 2 weeks.
4/6- JoJo was reevaluated by the neurologist and since there was little to no improvement and with the help and advocation from his therapists at DC that it wasn’t an ankle sprain the doctor agreed to redo his MRI.
4/16- JoJos results for his MRI are in and his doctor calls to tell me that my son suffered a rare stroke in his thalamus and refused to admit him into the hospital and had us bring JoJo in next day since it was an active stroke.
4/17- We met with neurologist and reviewed his imaging and doc still refused to admit JoJo and said everything will be done outpatient ASAP. We decided to just take JoJo to Nationwide Children’s where JoJo was immediately admitted and work up started.
4/17-4/26- JoJo went through multiple studies and NCH received JoJos records around the 21st and confirmed that JoJos 2/25 MRI was in fact not clean and already showed his first stroke that he had in December of 2020 on that MRI.
06/2021- JoJo went in for routine work up since we still could not find the cause of his strokes and he had some kind of episode where he lost temporary function to his legs and started to have urinary accidents. He couldn’t feel that he was peeing. Nothing came back on the stat MRI so JoJo was released after regaining function 2 days later.
07/21- JoJo was sent to Duke university where they did a work up for possible CNS Vasculitis but came back negative.
09/21- JoJo had 2 more strokes in his brain in his Basal Ganglia. Still High WBC and protein in his CSF but no other abnormalities. He was started on high dose 5 day regimen of steroids and released once regaining function again to baseline. Steroids seems to work.
We had a few scares through October but nothing seriously major.
JoJo was almost back to walking without a walker when at the beginning of November he had a urinary episode and started dragging his leg again but MRI and CT came back with no changes. He was given another round of IV steroids then sent home with oral steroids. He was doing great all of November.
11/30/2021… 10:30 at night JoJo and his brother were told to go to bed and JoJo couldn’t stand. We though his leg just fell asleep so we massaged him but no changes. We took JoJo to Dayton Childrens once again because it’s the closest hospital and they immediately transferred JoJo to Nationwide in Columbus.
12/1- JoJo undergoes another Spinal MRI and it shows 2 new lesions on JoJos spinal cord. By this time JoJo had lost all sensation to his legs but still had tone and reflexes. JoJo was immediately started on PLEX and IVIG to get inflammation down but that had little to no change. He was then started on rituxamab and cytoxan to suppress his immune system so the inflammatory cells could stop multiplying.
12/23- JoJo was transferred to PM&R service to start rehab for release from the hospital by 2/8. He still did not have function to his legs so he is now at wheelchair level.
1/7- JoJo underwent another Spinal MRI because of neurological changes and losing tone and reflexes in his legs and paralysis was now up to his nipple line. It was discovered that JoJo suffered another, very large stroke in his spine. From his T/3 all the way to his conus. The largest stroke JoJo has had. The doctors were now confident in saying the 2 lesions from 12/1 were strokes as well.
1/12-1/13- JoJos paralysis is worsening up into is t/4
1/13- JoJo was transferred out of rehab back to the medical floor to undergo more testing.
1/14- today JoJo underwent a spinal angiogram which came back as normal, and will undergo another MRI due to the changes in his paralysis. We haven’t gotten the results of that yet.
JoJo has been in the hospital for 44 days. This is his longest stay and I have not been able to fully recover financially from when this all started. I was on personal leave for a while and when I went back I caught up on most of my bills thanks to donations and my job. I lost my job in October due to my attendance. I did not have FMLA. My boyfriend has helped with most bills as well as my mother but it’s getting harder and harder to stay on top of everything right now. I’m in the hole almost across the board… I cannot lose my place to live, my lights need to stay on, my car payment and my phone payment. I’m not asking for it all to be paid but I’m just asking for a bit of help I cannot work when JoJo is so medically unstable I need to be able to be with him and provide the basic necessities for his older brother and sister.
JoJo has a biopsy and laminectomy coming up that’s going to keep him in the hospital for a while. I just honestly really need help. Anything at this point will help.
Organizer
Meghan Smith
Organizer
Dayton, OH