My wife Jennifer Grubb is very ill and needs help

This is Gregory Grubb. My wife did not and still does not want me to do this. She has worked 2 and 3 jobs all of her life to make ends meet and raised 3 wonderful kids on her own by doing that. Now we come to the time that both of us know that we have no choice at this point, but to do this. She is very private about her health issues, but has given me the o.k. to share this with you. My Jenny has been diagnosed with a very rare disease that is called Lipid Storage Myopathy. There is no cure for it and it will progressively get worse to where I won't have my Jenny with me anymore. It is inherited by a gene from her mother and a gene from her father. There are 5,000 people that have it in the world and my Jenny is 5,001.

In January, Jen didn't have the strength to get up the basement stairs and started crawling up them. Now, she is full blown in a wheelchair, can't hold her head up by herself. I have to help her bathe, dress her, and shave her legs. She is a very proud stubborn woman and wants to do this stuff herself. It literally has eaten her soul that she can't.

Lipid Storage Myopathy is an accumulation of lipids in the muscles and joints, which weakens the muscles and has caused permanent damage to her muscles and organs. The lipids also go to the brain, heart and lungs to where she will not be able to breathe any longer. The bottom of her lungs are collapsed from the lipid damage already.

We have been referred to Cleveland Clinic in Ohio because they have Geneticist that have seen patients with similar conditions. We are supposed to hear from them this week to get her an appointment. We have great medical insurance, but they don't cover Cleveland Clinic, but if there is any hope in bringing my wife back to some kind of normal, we have to do this. I know that we will be there from 1 to possibly 4 weeks. We just don't know anything at this point.

Jennifer has been denied Social Security twice. We have an attorney that is going to keep on fighting, but that doesn't help us in the now. We have my Disability income and have been doing our best to make ends meet and then this comes along. She just wants to stay home, but if there is any hope anywhere to keep her with me, we need to do it. I love this woman with everything that I have. I got ripped out of 25 years of my life with her because I listened to someone else's demands. I can't lose her. I want to grow old with her. I love her so much.

We both have so many emotions. We are both pissed beyond control. She just cries. I want to scream. We are both scared to death, devastated and sad at the same time.

We tried to get a loan, but denied because all of our cards are maxed out trying to make the bills every month.

Jen tried to see if we could get into a Ronald McDonald House down in Cleveland, but the patient has to be younger than 19 for the family to be able to stay there.

Please, if helping her is going to hurt you with making your own bills, don't feel obligated to help her. She totally understands. If you can't donate, maybe just write her a little note. I know that means so much to her too.

Thank you for listening. Gregory Grubb