This is Jayse, in July of 2018 he was diagnosed with Transverse Myelitis. This is a disease that causes inflammation to the spinal cord and brain stem. This can be triggered by any form of virus. We still do not know what caused this reaction for Jayse. He has one of the most severe cases seen by his doctors in Chicago. He did not respond to treatment in the normal time frame most patients respond to. At this time he is paralyzed from the neck down. Most cases have been known to recover anywhere from months to years. In rare cases, like Jayse, it can cause severe permanent damage throughout the body.
Jayse cannot breathe on his own and has a tracheotomy. Due to the severe nerve damage his heart cannot regulate itself and he has to have a pacemaker. He also now has a "G" tube (gastrostomy tube). Jayse also has to wear diapers that needs to be changed constantly because his body also cannot regulate his bowels and bladder function. Jayse can no longer speak normally from having the trachea and this makes him very frustrated because we can't always understand him.
At this point this is looking like this will be his new life. He is getting ready to be transferred to a rehab facility that is 3 hours away. He will have to go through a lot to get ready to come home. However, before he can even come home my parents have been told they have to make many unanticipated changes for Jayse to be able to live at home and be cared for full time by my parents.
Anyone who knows my parents are aware of their constant giving hearts and know they have cared for Jayse since the day he was born. They have always provided for him and his needs even before he lived with them, and have been his full time care takers for the last 4 years. They were also in the process of getting Jayse diagnosed with Autism right before this happened. He has many sensory issues and social skill delays, among some other known symptoms that accompany the Autism Spectrum. My parents have gone above and beyond to care for him and they need help right now.
They have to completely redo their first floor in their home to make it handicap accessible. His room has to be enlarged to fit a medical bed with all his machines included. Their front porch has to be reconstructed and they are required to purchase a vehicle that can facilitate him for travel. He will also need school tutors at home. As well as many supplies that are not covered by his insurance.
My mom will need to stay close to the rehab center for up to the next year while Jayse is in rehab learning to cope with his new way of life. They will be facing the strain of 2 households to finance during this time, on top of preparing their home for all these changes.
With Jayse's sensory triggers we will also have to take care in finding ways to make his new room as comfortable a possible for his new life. We have been told that he could be in rehab for up to a year or as few as 100 days. It all depends on Jayse's body and mind on how he progresses and heals.
If you cannot donate please share Jayse's story. His little voice needs to be heard. Though we are hopeful that Jayse will make a partial or full recovery over time, we have to prepare for this being his new reality. Jayse's life has changed as we know it, and all he wants is to go home. Please help me make this happen for him and my parents.
Thank you for your time, and thank you for any help you can manage.
It is truly appreciated!
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