Help Sarah Breathe and Survive: A Family in Crisis

Fighting for Every Breath: A Mother’s Journey with Rare, Overlapping Neurological Disease

Most people don’t know what it’s like to wake up one day and have their life changed forever, to go from walking to paralyzed, from a full working life with children, to permanently disabled, from parenting to being the one who needs constant care.

This is exactly what has happened to our dear, unselfish friend Sarah Leigland. Six years ago, she was stricken with Guillain-Barré Syndrome (GBS). She has never recovered. She now has atypical CIDP with central and autonomic nervous system involvement. It's treatment-resistant and continues to wreak havoc on her body in ways that most of us could not fathom or handle. She has a medically complex child that she and her husband have been caring for at great expense, but now Sarah's health has deteriorated in the worst ways. She can no longer walk, breathe without oxygen, speak above a whisper, use the restroom, eat solid food, or leave the house. Three years ago, she lost her entire colon to the effects of these illnesses. This has essentially left her bedridden.

Sarah spent 70 days in the hospital this year, which is a small expense compared to getting weekly IVIG infusions to keep her alive, constant oxygen, daily skilled nursing care, PICC lines, colostomy bag, permanent catheter, and multisystem neuromuscular and autonomic disorder.

She has 16 specialists treating her for non-diabetic hypoglycemia unawareness, central sleep apnea, intermittent hypoxia, POTS, SVT, PVCs, AFIB, tachycardia, bradycardia, brain atrophy, and cognitive-communication deficits. She has skilled nursing, physical and occupational therapy, speech therapy, respiratory therapy, and home visits for labs, X-rays, ultrasounds, and infusion medications.

This is Sarah’s life at 46 years of age.

Just a word about her: She has spent five of the worst years of her life attending support groups and online advocacy events for those with serious mental illnesses, doing whatever she can to help these families. She's a tireless researcher, endlessly supportive and giving, deeply committed to families in crisis, and without a single "whiny word" for her own situation. Every single person she helps is shocked to learn later how debilitated her health is.

The stress of caregiving on her husband has now impacted his health dramatically. He just spent 4 days in the hospital with an aneurysm. Their child at home still requires expensive therapies and daily care. Their medical bills are out of control, but worse, their insurance premiums have skyrocketed to thousands of dollars a month.

Their family is in financial ruin. Just some of the highlights include:

They are now choosing between groceries and medications. Sarah humbly states she'd just like to be able to feed their family. Last week, they were forced to take out a $1,700 loan at a whopping 160% interest just to meet their immediate needs.

Every hour for Sarah is a struggle to breathe and survive, with the added enormous stress of their continued financial burden. No one deserves to live like this while they are so desperately ill, least of all our friend who never stops trying to help other families.

What They Need to Pay For:

What You Can Do

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