Can a dream become reality?

This past Sunday I attended a fundraising event for Medicine for Humanity headed by Dr. Leo Legasse. The non-profit group takes doctors and nurses from UCLA to underserved countries (most recently Uganda) and teaches the local professionals newer diagnostic and surgery skills.

However, the Westerners who do this invariably say they learn more than those they teach. They are reminded of why they became doctors and nurses. They work under difficult conditions at a small rural hospital where resources are limited and lives hang in balance. They do what they can and the baby steps lead to bigger ones.

It's not unlike the first trip to the Moon. People said it couldn't be done. NASA did a lot of planning and training. It took time. Then the astronauts did it. "One small step for man. One giant leap for mankind." The dream became reality.

In the beginning when I learned of Kairit's diagnosis, I went on warp speed. I devoured the internet looking for information on ALS. Surely there had been advances since Aunt Geri had it. I wanted to know everything about symptoms, clinical trials, and best doctors. I wanted to raise $25 million for research. I recently learned that is the same amount the ALS Association is hoping to get in government funds during its Advocacy and Public Policy days in Washington, D.C. on May 9-11. So, I have had a reality check. We are going to take baby steps.

I heard today that the friendly lawyer from Canada who also had stem cell treatment in Duesseldorf when Kairit did, is not doing so well. He, like she, has not had any noticeable improvement. But Kairit has remained stable. His condition has progressed and he now needs a wheelchair to get around. He works on a part-time schedule. He's going to Sunnybrook Hospital in Toronto to check out a clinical trial. Thus is the struggle of ALS patients...a constant search for hope. Unlike most diseases where we have a potential wellness partner in drugs, in chemo, in surgery or in some other kind of therapy, ALS has no such offering.

Kairit is bored at home. It's tiresome even though she does little and can do very little for herself. She keeps in touch with friends and writes emails to thank those who have contributed to a fund at an Estonian bank to help pay for her care. There are many generous people, strangers, in fact, who have sent money to help Kairit cover the cost of the stem cell treatment. She survives on a small government stipend for disabled persons, just enough to cover basic necessities.

We continue to look for a clinical trial in Europe that she can participate in but thus far, to no avail. Her next appointment at Tartu University Hospital is on April 19 but there is no joy in noting that on the calendar. What can the doctors offer? Her son, Kent, leaves Estonia that day for England where he will live with friends and seek his future hopefully as a trained chef. Kairit misses him even though he has not yet left. Being a single mom can be lonely sometimes. Being a single mom with a terminal disease and a son beginning his life's journey is hard to bear. On one hand Kairit is happy she gave her son wings to fly. On the other hand, it's hard fighting ALS without a smiling, familiar face and a child to hug.

We talked about it today...

Life took on new meaning today in my skype conversation with Kairit. It happened when we talked about death.

Kairit told me that Silvi died at the end of March. She was 62. In the summer of 2009, the former seamstress who retired to a country home was having trouble swallowing and talking. She had lost weight. She was at Tartu University Hospital for tests in November at the same time that Kairit was undergoing an IVIG treatment. At the time it was still unclear as to whether or not Kairit had ALS.

Kairit and Silvi shared a room and the older woman helped Kairit who had lost much of the use of her hands. Silvi opened her milk and juice cartons…cut her food if necessary and so on… They became close. Silvi’s daughter phoned Kairit with the news that her mother had died.

Kairit was stunned that her new friend had died within five months of their meeting. It shocked her how fast Silvi’s ALS had claimed her life.

Our conversation turned more emotional as we talked about life and death. Silvi leaves behind two daughters and a young grandchild. Kairit has a young son, 19, and many family members and friends who pray for her every day. Her mother, my half-sister, Aino is a religious person of great faith who attends church regularly. What must she ask of God? How do we seek a miracle or do they just happen? Will the ALS researchers find a treatment or a cure in time?

Kairit does not want to die. She says, however, that she does not want to live in a vegetative state, either, when the mind sees but nothing else is alive.

We cut our conversation short today. She, to go to bed. Me, to search the internet, looking for a miracle.

I’m going to get real today. Maybe $25 Million is a stretch. Let’s just work to get as much as we can to the ALS Association as soon as possible. I’m looking for a miracle. Got one?

To visit our Family Fund page and make a donation, please click here.

April update

It has been a crazy full moon week. I fell while walking two dogs, one large, one medium-sized, that took off with me on their leashes. As I was sitting in the orthopedic doctor’s office listening to my diagnosis (fracture of the rotator cuff bone) and the prognosis I felt fortunate. Wearing a sling for several weeks and physical therapy is inconvenient and not fun but my broken bone is not a life-threatening illness and there is treatment. Kairit is not so lucky.

In conversations with people who work in ALS research and support services, the key in finding treatment and a cure is money. The treatments for cancer that have resulted in remissions and cures for patients have come as a result of billions of dollars into research and development. ALS has been underfunded in part because it affects fewer people per capita.

The following information comes from the National Institute of Health website:

As many as 20,000 Americans have ALS, and an estimated 5,000 people in the United States are diagnosed with the disease each year. ALS is one of the most common neuromuscular diseases worldwide, and people of all races and ethnic backgrounds are affected. ALS most commonly strikes people between 40 and 60 years of age, but younger and older people also can develop the disease. Men are affected more often than women.

In 90 to 95 percent of all ALS cases, the disease occurs apparently at random with no clearly associated risk factors. Patients do not have a family history of the disease, and their family members are not considered to be at increased risk for developing ALS.

About 5 to 10 percent of all ALS cases are inherited. The familial form of ALS usually results from a pattern of inheritance that requires only one parent to carry the gene responsible for the disease. About 20 percent of all familial cases result from a specific genetic defect that leads to mutation of the enzyme known as superoxide dismutase 1 (SOD1). Research on this mutation is providing clues about the possible causes of motor neuron death in ALS. Not all familial ALS cases are due to the SOD1 mutation, therefore other unidentified genetic causes clearly exist.

We need to find treatment and a cure now. We can do this. There is much data compiled over the past decade. We know what happens in the body of an ALS patient. Now we need to find out how to stop the disease from progressing, what causes it, and how to cure it. There are many clinical trials going on. If we can put the researchers into a room for a few days to discuss findings, give them the face-to-face time to go over data, then perhaps the goal of finding treatment and a cure might be closer.

Kairit is worthy of this goal. Everyone with ALS is worthy of this goal. It does not matter that fewer people in the world get ALS than cancer or some other devastating disease. Life is precious for all. Let’s give everyone a chance to live it to its fullest.