The Benefit of The Daut - a medical fund for Daut Gaba

The Benefit of The Daut - a medical fund for Daut Gaba

From Latif Gaba

My brother, Daut, suffers from a form of encephalitis, with many resulting and related symptoms. As a result of these challenges he and his wife Susan face a great financial burden. Please help any way you can.

Support this campaign

Subscribe to follow campaign updates!

Recent Updates

Update #5

about 1 month ago

Daut’s condition has continued to decline as his disease progresses. Thankfully, there is currently no sign of cancer. Last fall, after months of appeals, we finally received insurance approval for IVIG (intravenous immunoglobulin) infusion therapy, which attempts to slow the progression of the damage the autoimmune disease inflicts on his central and peripheral nervous system and his muscular system. Each infusion lasts for a full day – averaging 10 hours – and we are blessed to be working with an infusion company and RNs who come to our home for the treatments. Because Daut’s veins are so scarred from years of plasmapheresis, chemotherapy, and other IV treatments, he had a port placed again to facilitate delivery of the biological agent.
The treatments are beneficial. After he recovers from the physical strain, he notices better cognitive function (less confusion and short-term memory loss; fewer processing issues and speech difficulties) and decreased neuro symptoms (shooting/burning pain, tingling, numbness, which lead to weakness and frequent falls) for a period of time following each treatment. His neurologist has increased the frequency of the infusions to every 3 weeks, and we expect the current series to continue well into next year.
In addition, Daut undergoes quarterly botox injections in all the major muscle groups of both his legs to help combat extremely painful, debilitating, sustained muscle spasms. The toxin allows his muscles to relax enough that they aren’t in a constant state of contraction; it doesn’t eliminate the spasticity but helps to lessen it and thereby helps to improve his daily quality of life.
He also continues to take nearly 20 medications multiple times each day-some target the antibody that’s attacking his body; others work to slow cognitive decline, manage his blood pressure, thyroid function, and mood; some help to protect his GI tract from the constant assault; and several help to decrease his constant neurological and muscle pain from a “10” to (hopefully) a “7”.
While we face significant challenges each day, and we don’t know what the future holds, we are continually grateful for the ongoing thoughts, prayers, words of support, acts of kindness, and monetary gifts we’ve received. Your generosity has allowed us to obtain a wheelchair with power-assist functionality and has covered a several of the smaller bills that we’ve incurred over the last 8 years of Daut’s illness. Unfortunately, we still face a significant and growing financial burden (currently totaling in excess of $25,000); as in past years, we exhausted our annual medical flexible benefits balance by March. Since Daut’s disease is rare, progressive, and permanent, we need to pay off the current debt load while we work to obtain additional safety/adaptive equipment for our current apartment (shower bars, wheelchair ramps and rails, and a medical adjustable bed) to provide safety and accessibility at home. Daut would also benefit greatly from acquiring a trained companion/therapy dog (costing up to $20,000). In the next year, we will need to locate fully handicap accessible housing, and we just unexpectedly needed to replace our car, which has added an additional set of unplanned and significant expenses to our budget.
Any gift is helpful and much appreciated. Thank you and God bless you.

Campaign Wall

Join the Conversation

Sign in with your Facebook account or

Help Latif raise $60,000 by making a donation.

Choose A Giving Level

Latif Gaba posted a new update:
about 1 month ago

Update #5

Daut’s condition has continued to decline as his disease progresses. Thankfully, there is currently no sign of cancer. Last fall, after months of appeals, we finally received insurance approval for IVIG (intravenous immunoglobulin) infusion therapy, which attempts to slow the progression of the damage the autoimmune disease inflicts on his central and peripheral nervous system and his muscular system. Each infusion lasts for a full day – averaging 10 hours – and we are blessed to be working with an infusion company and RNs who come to our home for the treatments. Because Daut’s veins are so scarred from years of plasmapheresis, chemotherapy, and other IV treatments, he had a port placed again to facilitate delivery of the biological agent.
The treatments are beneficial. After he recovers from the physical strain, he notices better cognitive function (less confusion and short-term memory loss; fewer processing issues and speech difficulties) and decreased neuro symptoms (shooting/burning pain, tingling, numbness, which lead to weakness and frequent falls) for a period of time following each treatment. His neurologist has increased the frequency of the infusions to every 3 weeks, and we expect the current series to continue well into next year.
In addition, Daut undergoes quarterly botox injections in all the major muscle groups of both his legs to help combat extremely painful, debilitating, sustained muscle spasms. The toxin allows his muscles to relax enough that they aren’t in a constant state of contraction; it doesn’t eliminate the spasticity but helps to lessen it and thereby helps to improve his daily quality of life.
He also continues to take nearly 20 medications multiple times each day-some target the antibody that’s attacking his body; others work to slow cognitive decline, manage his blood pressure, thyroid function, and mood; some help to protect his GI tract from the constant assault; and several help to decrease his constant neurological and muscle pain from a “10” to (hopefully) a “7”.
While we face significant challenges each day, and we don’t know what the future holds, we are continually grateful for the ongoing thoughts, prayers, words of support, acts of kindness, and monetary gifts we’ve received. Your generosity has allowed us to obtain a wheelchair with power-assist functionality and has covered a several of the smaller bills that we’ve incurred over the last 8 years of Daut’s illness. Unfortunately, we still face a significant and growing financial burden (currently totaling in excess of $25,000); as in past years, we exhausted our annual medical flexible benefits balance by March. Since Daut’s disease is rare, progressive, and permanent, we need to pay off the current debt load while we work to obtain additional safety/adaptive equipment for our current apartment (shower bars, wheelchair ramps and rails, and a medical adjustable bed) to provide safety and accessibility at home. Daut would also benefit greatly from acquiring a trained companion/therapy dog (costing up to $20,000). In the next year, we will need to locate fully handicap accessible housing, and we just unexpectedly needed to replace our car, which has added an additional set of unplanned and significant expenses to our budget.
Any gift is helpful and much appreciated. Thank you and God bless you.

Join the Conversation

Sign in with your Facebook account or

Latif Gaba posted a new update:
about 1 month ago

Update #4

An update from Susan Gaba:

Daut’s condition has continued to decline as his disease progresses. Thankfully, there is currently no sign of cancer. Last fall, after months of appeals, we finally received insurance approval for IVIG (intravenous immunoglobulin) infusion therapy, which attempts to slow the progression of the damage the autoimmune disease inflicts on his central and peripheral nervous system and his muscular system. Each infusion lasts for a full day – averaging 10 hours – and we are blessed to be working with an infusion company and RNs who come to our home for the treatments. Because Daut’s veins are so scarred from years of plasmapheresis, chemotherapy, and other IV treatments, he had a port placed again to facilitate delivery of the biological agent.
The treatments are beneficial. After he recovers from the physical strain, he notices better cognitive function (less confusion and short-term memory loss; fewer processing issues and speech difficulties) and decreased neuro symptoms (shooting/burning pain, tingling, numbness, which lead to weakness and frequent falls) for a period of time following each treatment. His neurologist has increased the frequency of the infusions to every 3 weeks, and we expect the current series to continue well into next year.
In addition, Daut undergoes quarterly botox injections in all the major muscle groups of both his legs to help combat extremely painful, debilitating, sustained muscle spasms. The toxin allows his muscles to relax enough that they aren’t in a constant state of contraction; it doesn’t eliminate the spasticity but helps to lessen it and thereby helps to improve his daily quality of life.
He also continues to take nearly 20 medications multiple times each day-some target the antibody that’s attacking his body; others work to slow cognitive decline, manage his blood pressure, thyroid function, and mood; some help to protect his GI tract from the constant assault; and several help to decrease his constant neurological and muscle pain from a “10” to (hopefully) a “7”.
While we face significant challenges each day, and we don’t know what the future holds, we are continually grateful for the ongoing thoughts, prayers, words of support, acts of kindness, and monetary gifts we’ve received. Your generosity has allowed us to obtain a wheelchair with power-assist functionality and has covered a several of the smaller bills that we’ve incurred over the last 8 years of Daut’s illness. Unfortunately, we still face a significant and growing financial burden (currently totaling in excess of $25,000); as in past years, we exhausted our annual medical flexible benefits balance by March. Since Daut’s disease is rare, progressive, and permanent, we need to pay off the current debt load while we work to obtain additional safety/adaptive equipment for our current apartment (shower bars, wheelchair ramps and rails, and a medical adjustable bed) to provide safety and accessibility at home. Daut would also benefit greatly from acquiring a trained companion/therapy dog (costing up to $20,000). In the next year, we will need to locate fully handicap accessible housing, and we just unexpectedly needed to replace our car, which has added an additional set of unplanned and significant expenses to our budget.
Any gift is helpful and much appreciated. Thank you and God bless you.

Join the Conversation

Sign in with your Facebook account or

Latif Gaba posted a new update:
about 1 year ago

Update #3

The following is an update from Daut :

THE FACE OF PAIN
Physically recently my neurological disorder is clear to me that many of my symptoms have progressed some. The activity with my brain and central nervous system is less reliable.

The past few days I have been experiencing some nonstop unpleasant days. It used to be where 3-4 days a week, I would experience my good days, consisting of my moving slowly to & from the bedroom & living room & not much else. Thinking to one of those days as if a holiday I remember fondly. Some of what I experience is constant moderate nerve pain in some areas, frequent short-term memory loss/confusion, severe chronic fatigue, along with balance coordination & frequent episodes of vertigo.

Times have changed, my challenging (bad days) now are about 5 days a week. With only a small amount of more activity, my brain as if now speaking an unknown language, is frantically sending signals all over. Yesterday I felt so overwhelmed I decided to try & write down what I was experiencing.

Every few seconds, anyone of my senses reacts to my body the same. Like a wave crashing over/into me. Then my nervous system jumps immediately into "fight or flight" mode, like I am constantly holding my breath, and yet I am not. My hands and feet burn like never ending fire/ice needles, my calves and quads have deep muscle pain when put on attempting to stand, or even slight pressure like a pillow is a crushing pain. The nerves from my ankle to my knee on both legs is felt so severe & debilitating if in movement I am forced to stop or fall from stabbing nerve pain brought on by nothing at all. My other senses are no more kind. Even with an ordinary pleasant smell, I am left with constant & severe nausea. In addition, I have no interest in food. As for the sense of touch, the most casual normally either a caress by a loved one or clothing on my skin, my body reacts like severe pain.

Not meaning to come off dramatic, but after talking with Sue, she reminded me that although so much is going on, almost all is unseen. So I thought I would share this with some, to maybe give a little understanding to how I am doing.

Overall I am daily taking about a dozen different medications. About half are a variety of neurological meds, the rest a variety of pain meds. We are expecting a response from insurance about a therapy trial.

Join the Conversation

Sign in with your Facebook account or

Latif Gaba posted a new update:
about 1 year ago

Update #2

Dear Supporters & Friends:
I am here to report that the Fundly arm of the Benefit of The Daut Campaign has reached a new total - $1,345. We have much more to go, but it's good to pause and recognize this achievement. $1,345 is a good sum that will help Daut and Susan with their many expenses. And we thank you very much. If the current total of $1,345 reminds you -like it does me- of the year 1345, then you know that in that year, though the Hundred Years War was raging, and though the Black Death was on its way to the Continent, it was also a year which saw the long hoped for completion of the Notre Dame Cathedral in Paris. Even in difficult times, beautiful things can be accomplished. But with your help, our campaign totals will soon move out of the Middle Ages, and into the future.

Join the Conversation

Sign in with your Facebook account or

Latif Gaba posted a new update:
over 1 year ago

Update #1

[The following is a message from my brother.]
To all of my family and friends. I want to take a moment to share some details of my journey.
I have been diagnosed with a rare Encephalitis. This is a degenerative neurological disease that leaves me with debilitating, constant numbness, tingling (on a good day), burning, stabbing, shooting and shock-like pain in my hands, feet, and legs to my knees. I also experience hypersensitivity to touch, temperature, smells, taste, sounds, and vision problems. Because of incorrect signals sent from my brain I have more balance problems, including sudden and severe prolonged muscle spasms in both legs. I have daily migraines, overwhelming fatigue, and GI problems. Last, not least, I have daily constant short term memory loss.
Habakkuk 3:19
The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights. For the director of music. On my stringed instruments.
Only through the strength of the Lord can I make my days continue.
Thank you
Daut R. Gaba

Join the Conversation

Sign in with your Facebook account or