For many years Leah Ricketts has been living with a rare connective tissue disease called hypermobile Ehlers Danlos Syndrome (EDS). EDS is characterized by the body's inability to create proper collagen. EDS manifests itself in a variety of symptoms and for Leah has been characterized by near constant chronic pain, debilitating migraine headaches, pre-syncope (near passing out), and mental fog. Ever stoic, Leah would push through these daily symptoms with barely a complaint as she did her best to function as a stand-up community member, loving wife and mother.
Unfortunatly, Leah's condition deteriorated sharply over the past few weeks when she began experiencing frightening stroke like symptoms leaving her at times unable to talk (dysarthria), seizure like convusions, blacking out (syncope), slurred speech, blurred vision, unilateral (one-sided) numbness, pain, and weakness. Leah ended up in the ER at UW twice in a week and The Ricketts spent weeks searching for answers, consulting with experts at UW and Harborview on the west side.
Leah has now been diagnosed with Cranio-Cervical Instability (CCI) a condition in which her cervical spine (neck) can no longer support her head. Her severe symptoms are likely being caused by the neck dislocation cutting off the supply of blood and oxygen to her brain, but could also be caused by arterial dissection, and/or chiari, a condition where her brain slumps into her spinal cord in her neck.
The short-term solution is a well-fitting neck brace, strict bedrest with around the clock care as to minimize further damage and the likelyhood of an emergent event. She is no longer able to care for herself.
The long-term solution is cervical fusion (fusing her neck bones together) by a neurologist that can also correct any other abnormalities to her brainstem. Because of the severity of her condition and the severe instability of her neck, there are only a handful of surgeons in the world that can perform this complicated procedure. Leah has been referred to a specialist in Washington D.C. who is the leading doctor in the world for this condition. She will be traveling to D.C. on Tuesday for further imaging and surgery consultation. Surgery alone will be upwards of $20,000 because it is out of network and will not be fully covered by her insurance. The Ricketts will have to put a cash deposit down before surgery of up to $10,000. Travel, missed work, and lodging will futher be expensive. Recovery will be long and slow (further complicated by EDS) and will contribute even more to this significant economic hardship.
Now is the time folks. The Ricketts Family needs our help! Ever the genouous neighbors, upstanding community members, and loving family, it is in our hands to minimize the significant financial burden to these three wonderful people. No amount is too small. Please share this page with your friends and family!! Thank you for your time, consideration, and donation!!
- David Heyano
- Inga Schenker
- Josh and Niki Northrup
- Alyssa Childers
Organizer and beneficiary
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