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PLEASE HELP DEE AND HER MOM

$880 of $3,000 goal

Raised by 25 people in 6 months
Created June 30, 2018
THIS IS A STORY OF LOVE AND COURAGE.!!!

Dee has faced life courageously from her first breath. In 1974 my daughter Dee was born with Spina Bifida and Hydrocephalus. She also has epilepsy, a reconstructed neurogenic bladder, neurogenic kidneys and reconstructed bowel. She has had multiple shunt revisions and brain/spine infections and operations.

December 7, 2017 Dee became totally bedridden because of operations, sepsis, and two strokes. She will only be 45 on January 11TH.

Still, we have come a long way since that stormy morning when she was born with her spinal cord herniated outside of her vertebrae with no skin covering it. I was told she would not live out the day. In spite of countless life endangering surgeries and medical issues Dee champions life and surpasses expectations for Recovery time in and time again.

She is not only my daughter — she is my HERO. My daughter is also my spiritual teacher. She has taught me to try even when all is against success. She has taught me to speak up and push forward. She has taught me that true love is about caring for one another.

When Dee was 10 she no longer wanted to go to public school because she wore diapers and had to go to nurses station for changing and to get her seizure medicine. Kids are cruel and would taunt her. She walked with loffstrand crutches and sometimes she would trip and fall. No one asked her to sleep over for girls’ play dates.

By the 5th grade, public school was too hard for her. I found a school for physically disabled children that was a phenomenal place called The Massachusetts Hospital School. She learned how to dance and she could play kick ball,hopscotch, and she used a wheelchair to play basketball. She went to the Special Olympics in San Fransisco one year with her team and no I did not go.

Dee met her soulmate and future husband at this school. Chris was in an iron lung at that time. At 8years old he was struck with Duschene’s Muscular Dystrophy. He lived to be 45 years old. He came out of the iron lung because of an operation that allowed him to use a portable respirator. He lived at a rehab hospital at leaving the MHS where him and Dee became as close as two peas in a pod.

When they married. In 2001 their marriage could not be legally entered with the State register as Chris needed life support care 24/7. But they had a ceremony and a reception with about 50 people in attendance. The hotel/restaurant donated the entire reception to them. A minister performed a spiritual union ceremony.

Chris’s mom danced with her son and I danced with my daughter to Bette Midler’s “You’re my hero”. We presented them with a money tree in stead of presents. They used this money to go out to concerts, movies, and dinner over the next two years. It cost money to have a life support van transport them to outside activities if it was not covered by the Rehab Van. They gave dinner parties at all the usual holidays.

Dee was wheelchair bound but she could move out of chair with great upper body strength. She would get on his hospital bed and wash Chris’s feet for him and she learned how to suction him.

We all learned what love truly was about. We had to assist them but they never gave up taking care of what they could. Chris was able to guide her intellectually and emotionally always be there for her. He was as much a son to me as my own. He sadly lost his battle with MD in 2015.

Any strength I have came from those two teaching me to go forward. I owe the best part of me to just never giving up. I will have to die before I will ever not be there for her. She has taught me to expect myself to do better no matter how broken or lost I might be.

I have tried to give her a home no matter what and we have huge “no matter whats”.

I started this fundraiser so I could give her some comfort and keep her with me as her medical needs swamp us. But it never gets very far off the ground so I just do what I can. We get a little help here and there.

My only regret is that I can’t take her pain and carry it for her.

As I said, in December of 2017 she had emergency surgery that has left her bedridden. I have been trying to get her back to baseline for months but infection keeps setting her back. In October and just ten days ago (December 2018) she had two strokes losing much strengths some speech and swallowing. VNA is short term and we will soon be on our own.

Unfortunately I have been suffering from medical issues myself. My insulin is often not within reach and I go without. My social security is over the limit for State Help.

At 70 years of age it’s not as easy to bounce back and ignore spinal compression pain without any narcotics, but my love for my daughter keeps me going sober and free of drugs. I use alternatives like heat and ice and rest.

I need YOUR help to keep home so she can thrive. When in the hospital our living expenses fall behind and medical supplies that Medicare does not pay for add up when she gets home. We need an all electric hospital bed and a special mattress. I would like to get her a tablet that she can rehab her mind and hand on. Her nutrition can be costly as she needs special shakes for her muscles.

If we were fortunate enough to raise enough funds I could replace her all electric bed that is dying and get a mattress that prevents bedsores. If we raised more than enough, I would use it for first and last month rent on an accessible apartment that was more like a home. Right now we are in a small studio. But regardless we are grateful even for small donations that help with day to day items. We use donations to keep transportation and a roof over our heads as well as medical supplies and copay for my treatments.

To get a better idea who Dee is review all the photos. I try to post updates frequently.

We appreciate any and all kindness and support.
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Update 46
Posted by Nana Miggz
1 day ago
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Hi everyone! Still working on leads about a bed. Dee sat up a couple more times! She is getting stronger even with a few setbacks. I am in need of some respite time so I can take care of my health issues. Being 70 is challenging when you have spinal compression but I too am making some progress.
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Update 45
Posted by Nana Miggz
5 days ago
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We are struggling. Please consider passing this on to any who might consider helping.
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Update 44
Posted by Nana Miggz
12 days ago
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Please consider a donation to our Campaign for Dee’s 45 th BIRTHDAY ON JANUARY 11th.
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Update 43
Posted by Nana Miggz
16 days ago
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Please help us get this bed and mattress. If you have any resources like Knights of Columbus or Lions Club or similar please make them aware of her need. The bed must be fully electric.
We also need disposable chux, wipes, soft paper towels— Ensure Protein Drinks, Powerade zero, cranberry juice, toiletries.
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$880 of $3,000 goal

Raised by 25 people in 6 months
Created June 30, 2018
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