Hope for Owen
Donation protected
Since January 2019 Owen has been the victim of a sudden and rapid decline in health.
Although he has been sick off and on most of his life with strange symptoms and mysterious ailments it wasn't until his sudden 30-pound weight loss, extremely low blood pressure, high heart rate and personality changes, that we were able to find a medical roadmap of sorts to some answers.
Owen has since been diagnosed with:
*Ehlers-Danlos Hypermobility Syndrome
*Gastroparesis
*Dysautonomia (Dysfunction of the Autonomic Nervous System)
*POTs (Postural orthostatic tachycardia syndrome)
*Alantoaxial Instability
(He also has some Spinal cord damage from birth, but we are not sure yet the extent of the damage.)
Owen has been through so many tests, medicine changes, blood draws, MRIs, X-rays, and Doctors these past 12 months and yet.. his health still declines to the point he is almost completely housebound now.
My once healthy, strong, boy that ran down Ruby Beach 5 years ago.. is at times unable to leave his bed or recliner due to the pain.
He is just a ghost of his former self.... and he is losing hope for the future due to his constant and terrific pain.
His body is in constant fight-or-flight mode due to his POTs, His legs are shooting pain, his hand's tingle and go numb, he has headaches, his neck hurts, has light sensitivity, brain fog, throat problems, stomach problems, depression, etc...
He can hardly walk to the bathroom without assistance. Most days he has to use a wheelchair if we have to go any distance further than a few feet. He has become depressed and even suicidal in his despair. He has lost all hope of ever being a normal teenager, and I am terrified that his heart will give up before we can find help.
Every medication, lotion, compression sock, Red Cord Therapy, Supplement, diet change we have tried at home have thus far been unsuccessful, and his AMAZING Dr. Bell is at a loss of sorts as well.
Even after our trip to Dallas in January for his POTS, we have found ourselves once again searching for answers. The techniques and treatments that should have made him feel relief only caused him more symptoms and stress. Although he is in a much better place mentally, he is still in extreme pain.
March 8th we will be traveling to Houston for scheduled visits to a Neurologist, Cardiologist and Geneticist all through Children's Hermann Memorial Hospital. The visits themselves will be covered by insurance.
(We will be flying since the car ride to Dallas was so painful and difficult for Owen.)
I am hoping in Houston we will not only be able to find some answers to the root of Owen's pain, but hopefully some relief for him both mentally and physically.
All funds raised will be used exclusively to help with travel expenses (air fair, hotel, transportation, food... etc), equipment, and further treatments at home.
I will also be missing more work that will make it difficult to cover bills.
**Please know I am not at all comfortable with asking for money. I have been a single parent for 25 years and I have always done it on my own... but this is no longer about me... it's about me trying with everything I have in me to keep my son on this earth for as long as I possibly can and to find answers for him.
Thank you so much.
Robyn and Owen Thomas #HopeforOwen
Please follow our Blog for a more in-depth explanation of his illnesses and our journey.
https://wordpress.com/post/fixingowen.wordpress.com/172
and here are the links for information on his actual diagnoses
https://www.ehlers-danlos.com/what-is-eds/
http://dysautonomiainternational.org/
Mailing address: Owen Thomas
c/o Robyn Thomas
PO Box 94
Panhandle, TX. 79068
Although he has been sick off and on most of his life with strange symptoms and mysterious ailments it wasn't until his sudden 30-pound weight loss, extremely low blood pressure, high heart rate and personality changes, that we were able to find a medical roadmap of sorts to some answers.
Owen has since been diagnosed with:
*Ehlers-Danlos Hypermobility Syndrome
*Gastroparesis
*Dysautonomia (Dysfunction of the Autonomic Nervous System)
*POTs (Postural orthostatic tachycardia syndrome)
*Alantoaxial Instability
(He also has some Spinal cord damage from birth, but we are not sure yet the extent of the damage.)
Owen has been through so many tests, medicine changes, blood draws, MRIs, X-rays, and Doctors these past 12 months and yet.. his health still declines to the point he is almost completely housebound now.
My once healthy, strong, boy that ran down Ruby Beach 5 years ago.. is at times unable to leave his bed or recliner due to the pain.
He is just a ghost of his former self.... and he is losing hope for the future due to his constant and terrific pain.
His body is in constant fight-or-flight mode due to his POTs, His legs are shooting pain, his hand's tingle and go numb, he has headaches, his neck hurts, has light sensitivity, brain fog, throat problems, stomach problems, depression, etc...
He can hardly walk to the bathroom without assistance. Most days he has to use a wheelchair if we have to go any distance further than a few feet. He has become depressed and even suicidal in his despair. He has lost all hope of ever being a normal teenager, and I am terrified that his heart will give up before we can find help.
Every medication, lotion, compression sock, Red Cord Therapy, Supplement, diet change we have tried at home have thus far been unsuccessful, and his AMAZING Dr. Bell is at a loss of sorts as well.
Even after our trip to Dallas in January for his POTS, we have found ourselves once again searching for answers. The techniques and treatments that should have made him feel relief only caused him more symptoms and stress. Although he is in a much better place mentally, he is still in extreme pain.
March 8th we will be traveling to Houston for scheduled visits to a Neurologist, Cardiologist and Geneticist all through Children's Hermann Memorial Hospital. The visits themselves will be covered by insurance.
(We will be flying since the car ride to Dallas was so painful and difficult for Owen.)
I am hoping in Houston we will not only be able to find some answers to the root of Owen's pain, but hopefully some relief for him both mentally and physically.
All funds raised will be used exclusively to help with travel expenses (air fair, hotel, transportation, food... etc), equipment, and further treatments at home.
I will also be missing more work that will make it difficult to cover bills.
**Please know I am not at all comfortable with asking for money. I have been a single parent for 25 years and I have always done it on my own... but this is no longer about me... it's about me trying with everything I have in me to keep my son on this earth for as long as I possibly can and to find answers for him.
Thank you so much.
Robyn and Owen Thomas #HopeforOwen
Please follow our Blog for a more in-depth explanation of his illnesses and our journey.
https://wordpress.com/post/fixingowen.wordpress.com/172
and here are the links for information on his actual diagnoses
https://www.ehlers-danlos.com/what-is-eds/
http://dysautonomiainternational.org/
Mailing address: Owen Thomas
c/o Robyn Thomas
PO Box 94
Panhandle, TX. 79068
Organizer
Robyn Thomas
Organizer
Panhandle, TX
