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Help Me Get Dee Back Up!

$545 of $3,000 goal

Raised by 20 people in 4 months

Dear friends.. The story of love

Thank you all for your kind thoughts.

In 1974 my daughter was born with Spina Bifida and Hydrocephalus. She is also epileptic. We have come a long way since that stormy morning 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 championed life and surpassed expectations for Recovery. She is not only my daughter — she is my HERO.

My daughter is my 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 trip. Sometimes she was tripped intentionally.

So I placed her in 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 usedthis 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.

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.

Unfortunately I have been suffering from medical issues myself. At 69 years of age it’s not as easy to bounce back and ignore pain, but my love for my daughter keeps me going. I need help to bring her home and keep up with our living expenses and medical supplies that Medicare does not pay for.

If we were fortunate enough to raise enough funds I could hire a private duty nurse to provide support and keep us together. 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.

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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Dee sitting with assistance for first time in weeks. This is what it’s all about! You are helping her to thrive again every time you donate. Her will to succeed is strong though her body is a huge challenge. We welcome supply donations. We need a new all electric bed as the motor is going but we do not get enough backing to make this possible. Still, we are grateful for the help we have been blessed with by the kind generosity of friends.
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Good morning. Dee is working with OT to get at least one hand/arm functioning. Her window to the word is now only Facebook. I am turning her to keep bedsores from getting worse or developing new ones. I still haven’t found anyone to help wash her hair. Donations have been few and far between.
Please if you can not help us with a donation could you ask or post this to people who might help?
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Dee is home again. A new challenge is in front of her: she has pressure on her spine (inoperable) causing her to not be able to use left hand partially and right hand totally. She did have a stroke and they are doing studies of her blood work to look for underlying disease. Her neurosurgeon said her shunt is functioning so he will not be going in there at this time. Her other blood work looks good. Urology Study has been moved to January. So back to trying to stabilize and then move forward. We still need to get an all electric bed, a Hoya lift, and some real help. Any donations are appreciated.
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Almost a full year since Dee has been out of bed. Now both hands are clenched close. It can be daunting for sure. It saddens me she has missed the entire Spring, Summer, and Fall without once sitting outside or going to get herself a coffee. She seldom has real clothes on. I am not holding up too well Myself but I keep trudging along. Very few donate to the Campaign but I keep posting hoping someone will decide to help us get this to truly take off.
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$545 of $3,000 goal

Raised by 20 people in 4 months
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