OUR MOM - OUR INSPIRATION

Hi, my name is Jen and my sister is Cristy. Here is our mother's story.

 

Eight years ago, our mom became ill. It has been the most difficult thing to stand by and helplessly watch our beautiful mother (Mamaw to her grandkids) suffer. She once was a healthy woman who loved to go jogging daily, work in her yard and garden, play with the grandkids and her pets to being in constant pain throughout her entire body and barely able to breathe without oxygen.

 

She was first diagnosed with what they thought was asthma and also a rare autoimmune disease called Scleroderma. (After seeing many specialists and having many tests done the doctors were

able to determine that it definitely was not asthma.) Scleroderma is a rare disease that causes hardening and tightening of the skin and connective tissues. The skin on her hands and her feet will get so tight and hard, it causes deep cracks that bleed. She has to keep them bandaged most of the time. This keeps her from doing the most basic and simple human functions like trying to walk, pick things up, open bottles and fasten buttons to get dressed. Scleroderma can also affect internal organs, specifically the lungs.

 

After many years of seeing several specialists, the doctors were able to put a more definitive diagnosis to her illness. It's called Antisynthetase Syndrome. This is a very rare autoimmune disease that not much is known about. She has an antibody that is unidentified. In our mother's typical unselfish nature she has partaken in clinical trials to maybe get this antibody identified and help the next person. This comes with an umbrella of diseases under it -Scleroderma, Raynaud's Syndrome, Polymyositis, Dermatomyositis and Interstitual Lung Disease. This lung disease causes inflammation and scarring that make it hard for the lungs to get enough oxygen. This scarring is called Pulmonary Fibrosis.

 

She regularly sees a pulmonologist and a rheumatologist. She has to routinely have blood work done, undergo routine breathing tests, walking tests and stress tests to name a few. Her insurance doesn’t cover everything, as most of this is experimental. The travel expenses to get to these treatments and tests alone has taken such a toll on her and her husband. She has been traveling to John's Hopkins University in Baltimore which is a 3 hour drive one way for them. Most times she has to stay overnight and pay for a hotel.

 

While she suffers from every symptom of her disease the worst has been the IPF (pulmonary fibrosis) in which she wears oxygen for. Pulmonary fibrosis symptoms include breathing in short, shallow spurts, a dry cough that doesn’t go away, fatigue, shortness of breath and weight loss due to her struggling to swallow. This is a progressive disease for which there is no cure, and it eventually leads to death. The disease may get worse quickly (over months) or very slowly (over years). Prior to this diagnosis she lived a very healthy lifestyle. She was not a smoker, she ate healthy, and she exercised on a daily basis. The exact underlying cause is unknown. Average survival is between three to five years. There are patients who live less than three years after diagnosis, and others who live much longer. The scarring on her lungs has progressed to the point where her only option left is to have a double lung transplant if she wants to try to extend her life.

 

We are asking for your help. She is struggling to pay her Medical bills, cost of medications, monthly infusions, gas money, lodging, and food. It has been very exhausting for our mom but she is a fighter. After her surgery she will be required to stay in the Baltimore area for a minimum of 5 months so she can be closely monitored and be near the hospital if emergency medical care is needed. She is already swamped with thousands of dollars in medical bills. After her insurance pays their portion of the cost of her transplant, she will be responsible for about $15,000 to $20,000.

 

Please consider donating to help with her current and future medical expenses, lodging, and gas money. We are really hoping to raise at least $50,000. Any amount we would be forever grateful. Even if it's only $5 every little bit helps! If you are not able to donate, we graciously ask that you share this with as many others as possible. We ask that you continue to keep our family in your prayers and thank you for not only your financial support but emotional support as well. God Bless!

 

With Love,

 

Jen and Cristy