Help Hannah get life saving surgery
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Hannah’s Life-Saving Surgery
Hi, I’m organizing this fundraiser for my fiancé, Hannah. She has Ehlers-Danlos Syndrome, craniocervical instability, Atlantoaxial instability, Chiari malformation, brainstem compression and tethered cord syndrome, among other things. Her most frightening symptom is a severe form of dystonia called dystonic storms. They are life-threatening, seizure-like events that can last up to hours and require medical intervention to end. She is at risk for respiratory failure and cardiac failure during each event, so she has spent more than 60 days in the hospital since August, which is when she first started having these events. We finally found a medication that stabilizes her, but she is currently stuck on strict bed-rest to prevent triggering another episode and needs constant care, which I am providing, leaving me unable to work for the time being. Hannah is awaiting an urgent 3-in-1 surgery that could save her life and end many of her worst symptoms. There are only a handful of surgeons in the country who specialize in the spinal issues associated with Ehlers-Danlos Syndrome. The surgeon, located nearby in Maryland, is the only surgeon who can operate within a reasonable timeframe, and furthermore, he is the best surgeon available. Unfortunately, he is not in-network and getting insurance to cover the surgery will be challenging. We were told there is <10% chance insurance will cover this surgery. However, we can go ahead with the surgery on December 16th if we can come up with a down payment of $18,400 for the surgery, which costs a total of ~$94,000. We greatly appreciate any contributions towards Hannah’s surgical costs or even just prayers for her health and surgery.
Thank you!
Eric and Hannah
Hi, I’m organizing this fundraiser for my fiancé, Hannah. She has Ehlers-Danlos Syndrome, craniocervical instability, Atlantoaxial instability, Chiari malformation, brainstem compression and tethered cord syndrome, among other things. Her most frightening symptom is a severe form of dystonia called dystonic storms. They are life-threatening, seizure-like events that can last up to hours and require medical intervention to end. She is at risk for respiratory failure and cardiac failure during each event, so she has spent more than 60 days in the hospital since August, which is when she first started having these events. We finally found a medication that stabilizes her, but she is currently stuck on strict bed-rest to prevent triggering another episode and needs constant care, which I am providing, leaving me unable to work for the time being. Hannah is awaiting an urgent 3-in-1 surgery that could save her life and end many of her worst symptoms. There are only a handful of surgeons in the country who specialize in the spinal issues associated with Ehlers-Danlos Syndrome. The surgeon, located nearby in Maryland, is the only surgeon who can operate within a reasonable timeframe, and furthermore, he is the best surgeon available. Unfortunately, he is not in-network and getting insurance to cover the surgery will be challenging. We were told there is <10% chance insurance will cover this surgery. However, we can go ahead with the surgery on December 16th if we can come up with a down payment of $18,400 for the surgery, which costs a total of ~$94,000. We greatly appreciate any contributions towards Hannah’s surgical costs or even just prayers for her health and surgery.
Thank you!
Eric and Hannah
Organizer
Hannah Pullins
Organizer
Owings Mills, MD
