Elizabeth's Medical Treatment
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A page dedicated to raising funds to be used in the search for a diagnosis and medical treatment for the mystery disease that has hijacked our daughter’s childhood. The disease - a mysterious entity that is attacking her central nervous system - is disrupting her digestion, hormone regulation, mineral absorption, neurotransmitter transmission, respiration, elimination, sleep, neuromuscular function, & cognition. She is in constant pain, ranging from mild (on good days) to excruciating (on bad days). We want Elizabeth to be able to enjoy being alive again!
Thankfully, we are making progress. Now that she has a team at MAYO dedicated to solving the puzzle, a research geneticist here in Atlanta, and the Director of Immunology at Emory on board, there are more clues. We now know that the disease is autoimmune, that it is causing the strokes, migraines, the life threatening dystonias, the pain, the intermittent paralysis, and the difficulty with movement. The doctors in Phoenix are working in conjunction with the doctors here at Emory and CHOA to do further, more invasive testing. In the meantime, we see each doctor here in Atlanta every 3 months (that's 36 MD appts every 12 weeks, or 12 doctor appts a month) and every 3 months we also have to fly to Phoenix to follow up with the six members of her team there (6 more appts every 90 days). In total, that makes 42 appts every 90 days.
Thinking about it in these terms helps to give a little bit of scope to the daunting task her care will be, which helps us to steel ourselves for the time, energy, fortitude, & money that will be required. It may seem completely undoable & overwhelming, but equipped with our love for one another, the support and prayers of our community, our faith, and all of you, we will find joy in the small things. We are determined to enjoy our time together, and continue to live, laugh, and love.
In order to do that, we need your help. The first couple of years of treatment have drained all of our financial resources. Last year's 3 month stint to, in, and from Arizona were paid for by the money we raised on last year's fundraiser, and we are so thankful. Now, we are preparing to go to Mayo again, in both July and November.
Many have asked how they can help. The answers are not monetary alone; rather, they include prayers, encouragement, meals, visits, connections, and of course, financial resources.
However you are able to help, we thank you. There are days that we do not know how we are still standing - and we know that it is because of the prayers, goodwill, thoughts, and help of our family, friends, and network of caring people.
Thank you for your generosity & kindness!
Thankfully, we are making progress. Now that she has a team at MAYO dedicated to solving the puzzle, a research geneticist here in Atlanta, and the Director of Immunology at Emory on board, there are more clues. We now know that the disease is autoimmune, that it is causing the strokes, migraines, the life threatening dystonias, the pain, the intermittent paralysis, and the difficulty with movement. The doctors in Phoenix are working in conjunction with the doctors here at Emory and CHOA to do further, more invasive testing. In the meantime, we see each doctor here in Atlanta every 3 months (that's 36 MD appts every 12 weeks, or 12 doctor appts a month) and every 3 months we also have to fly to Phoenix to follow up with the six members of her team there (6 more appts every 90 days). In total, that makes 42 appts every 90 days.
Thinking about it in these terms helps to give a little bit of scope to the daunting task her care will be, which helps us to steel ourselves for the time, energy, fortitude, & money that will be required. It may seem completely undoable & overwhelming, but equipped with our love for one another, the support and prayers of our community, our faith, and all of you, we will find joy in the small things. We are determined to enjoy our time together, and continue to live, laugh, and love.
In order to do that, we need your help. The first couple of years of treatment have drained all of our financial resources. Last year's 3 month stint to, in, and from Arizona were paid for by the money we raised on last year's fundraiser, and we are so thankful. Now, we are preparing to go to Mayo again, in both July and November.
Many have asked how they can help. The answers are not monetary alone; rather, they include prayers, encouragement, meals, visits, connections, and of course, financial resources.
However you are able to help, we thank you. There are days that we do not know how we are still standing - and we know that it is because of the prayers, goodwill, thoughts, and help of our family, friends, and network of caring people.
Thank you for your generosity & kindness!
Organisateur et bénéficiaire
Stacy Simpson Assaf
Organisateur
Duluth, GA
Bernard Assaf
Bénéficiaire