Relieving the Byers
Donation protected
The majority of 2017 life was normal for Barry, Hayley, Kaylee, and Jake. Barry and his two kids had moved in with Hayley and they were starting their life as a family. Barry proposed over the summer and they were planning a beach wedding for Summer 2018. Everything was going as planned. Barry's kids lost their mother at a very young age and he had found someone who loved and took care of them like her own and Hayley had found someone who truly adored her. Things were perfect and then life threw a curve ball. Barry developed some strange (obviously) neurological symptoms, Hayley as an RN assumed what we at the time though would be the worst, MS or a brain tumor.....in hindsight those would have been better as they have treatment options. They went ahead and got married still with the plans of a beach ceremony in the future but this would make things easier with insurance, kids, legal matters, etc. I will spare all the small details but he continues to come up with more and more symptoms.
August 2017- Barry was a full time welder, he drove, he helped with chores, worked out regularly, he got kids where they needed to be....ya know....all those things 35 year old dads take for granted.
Fast forward- September 2017- March 2018
He can't walk with out assistance, his speech is very difficult to understand, he falls, he has short term memory loss, his hands and feet drip with sweat, he had dropped a significant amount of weight, he requires assistance with almost every task we do daily, Ataxia, double vision, uncontrollable laughter, and the list goes on.
March 28th, 2018- We have a diagnosis after 7 months of frustration and 4-5 specialists and numerous other appts we we finally got and answer.
Uncharacterized SCA with Multiple System Atrophy.
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Multiple-System-Atrophy
It isnt isn't a great diagnosis as there are no knows treatments and no cures. Hayley is trying IV Steroids, they discontinued several meds, and up'd his dose of CO Q 10 from 200mg to 4000mg but other than that we are just looking for clinical trials.
The Needs-
Hayley is now the sole provider for a family of 4 and even though she works more hours than anyone else I know, it's still a struggle. Here's a list of things I hope to raise money to help with so maybe she can cut back on work and enjoy time with Barry.
Medical bills
Household bills
Modifying their home to be handicap accessible
Help with the kids expenses
Paying sitters as he requires 24hr supervision
Groceries
Medications
Travel expenses
Most importantly, PRAYERS!
❤️-Charbonet
August 2017- Barry was a full time welder, he drove, he helped with chores, worked out regularly, he got kids where they needed to be....ya know....all those things 35 year old dads take for granted.
Fast forward- September 2017- March 2018
He can't walk with out assistance, his speech is very difficult to understand, he falls, he has short term memory loss, his hands and feet drip with sweat, he had dropped a significant amount of weight, he requires assistance with almost every task we do daily, Ataxia, double vision, uncontrollable laughter, and the list goes on.
March 28th, 2018- We have a diagnosis after 7 months of frustration and 4-5 specialists and numerous other appts we we finally got and answer.
Uncharacterized SCA with Multiple System Atrophy.
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Multiple-System-Atrophy
It isnt isn't a great diagnosis as there are no knows treatments and no cures. Hayley is trying IV Steroids, they discontinued several meds, and up'd his dose of CO Q 10 from 200mg to 4000mg but other than that we are just looking for clinical trials.
The Needs-
Hayley is now the sole provider for a family of 4 and even though she works more hours than anyone else I know, it's still a struggle. Here's a list of things I hope to raise money to help with so maybe she can cut back on work and enjoy time with Barry.
Medical bills
Household bills
Modifying their home to be handicap accessible
Help with the kids expenses
Paying sitters as he requires 24hr supervision
Groceries
Medications
Travel expenses
Most importantly, PRAYERS!
❤️-Charbonet
Organizer
Charbonet Hightower
Organizer
Gladewater, TX
