Help Newly Disabled Mother Stricken with Crippling Incurable Disease

$816 of $21,000 raised

raised by 20 people in 8 months

Miryam is a mother of  who two started a new career a few years ago to help new mothers with their babies as a lactation consultant and postpartum doula and a small shop of baby care items and baby carriers.  Getting the business required some investment from the family, and she worked very hard to get the business off the ground.  The family is now living on a single military salary.  Her disease has caused a spinal cord injury that has made her unable to work and left her with debt that is diffucult for the family to pay back.

Miryam was fairly healty until she had her own children, and was working until that time.  However, her pregnancies were inexplicably complicated and she suffered with them, becoming very sick.  It was a medical mystery.  It took years to finally get a proper diganosis for what was going wrong.

Only after the damage was done and her children were born, Miryam's problem was finally diagnosed as a rare disease of the connective tissue called Ehlers-Danlos Syndrome. In order to get to the bottom of things, she needed to be seen world experts on the disease that were not covered by insurance.  The disease is incurable and untreatable, but it causes severe pain and disability.  The problem is a genetic deficit that makes her body not able to creat the tissues that hold her joints and internal organs together, causing distruction of the joints and severe problems with autonomic dysfuntion.  The connective tissues holding her pelvis and hips together were destroyed in pregnancy, and she was unable to walk without a wheelchair or crutches after the last child was born until and operataion fused her the bones of her pelvis with titanium.  Just as she was recovering from that operation, the ligaments that hold the first two vertebrea of her neck together, where her head rests, tore loose, causing a dislocation of her neck.  This created a life threatening situation that required a 6 hour neurological surgery.  She is left with deficits in swallowing, hearing, balance, and speaking because of damage to her cranial nerves, spinal cord, and brain stem.  She now has limited mobility and difficulty doing normal tasks of daily living. Her joints have become so fragile they dislocate with every day activities, and the next injury could be at any time.

During the initial recovery from these injuries, this mother hoped one day to get back to working in her business helping mothers and babies, just as bills piled up.  Imagine, a woman who works with babies and has been told not to have anymore.  And now she can't go back to that job.  She's too sick and may be thrown back into the hospital with another injury from fragile tissues at any time, and will only add to the bills.  Right now it does look like two more operations are in her future  

Miryam is too sick to work and is going on disability.  The family now lives only on a single military income; her husband is an active duty serviceman.  Miryam has even tried training for a job she could do flexibly and run from home, in hope that that she'd be able to manage honest work that way.  The doctors say she can't even do that anymore.  They are trying to get her a portable electric wheelchair so she can more safely leave the house, but the insurance red tape has not come through, and they may need to pay out of pocket. They owe money related to her illness, doctors and hospital bills, medical equipment, and career re-training, that haven't  been covered the way they thought they would be, and she can't work to pay it back.  They are curretly expecting that she will need at least two more surgeries in the near future, and will probably need to travel to see specialsts in other parts of the country for care, and the travel expenses will not be covered by insurance.  It will have to come out of the family's budget.  She tried so hard to get her dream job going in a hard economy, and the business had to shut down only because of her illness.  She went into debt because she became so sick.  Miryam cannot earn the money back in another way.  The family is waiting for social security to kick in, but it won't be much, and they are told that the filing process will take up to two years.  Please help them let this woman retire from working life without the burden of this debt.

$816 of $21,000 raised

raised by 20 people in 8 months

Created by

Miryam Weisberg
July 2016

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Donations

Anonymous donated

3 months ago $2.00
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5 months ago $50.00
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8 months ago $18.00

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