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.

Humbling generosity keeping hope alive

Just for a moment, I'd like you to step into Kairit's shoes. One day you are walking in the sand at the beach, playing volleyball and riding a bike. You feel strong, vital, and healthy. Then, slowly, over a brief few months your muscles begin to fail you. The doctors put you through a battery of tests. They don't know what's wrong. One suggests you need to be in a psychiatric hospital because he never heard of such a thing as muscles feeling like popcorn in your body. Another says you are just nervous and need Xanax. You can no longer climb stairs, or walk with your head held high, nor quickly nor far. You can no longer work. The muscles in your hands are weakening, too. You can't brush your hair because you can not hold a brush.You hold a fork and knife like a child holding a tool. Someone needs to cut your food.

You finally find out from the doctor that you have amytrophic lateral sclerosis, or ALS. When you ask what it is, you learn that it's a difficult problem for which there is no cure. And, oh, there's no treatment either.

We need to change this. Several months ago Kairit's sister, Hurmi, reached out to friends and family to help Kairit fund the stem cell implantation therapy she underwent about ten days ago. Kairit lives on a small government stipend for which she is grateful but does not provide any extras. We have learned that people are generous. The family is grateful for all the assistance.

Just today Kairit learned that a very generous Spanish gentleman donated a large sum that will cover all of the medical expenses Kairit incurred at the X-Cell Center not yet paid. Such kindness is overwhelming! It enables Kairit to focus on staying healthy with an eye on the future.

We have skyped this past week. Kairit has not had any noticeable effect yet from the stem cell treatment but she looks and feels well. There is no noticeable deterioration either. Hope is still alive.

We have started a campaign to raise funds for the Los Angeles Chapter of the ALS Association for a symposium to bring together ALS researchers from around the world. There has never been such a gathering.

This year on June 27-28 the ALS Association is holding its first two-day symposium near Sacramento. It will bring together local and regional researchers who no doubt will welcome the face to face time to discuss the data that has amassed on ALS. I so hope it will bring new ideas and help Kairit and others live.

If you would like to donate to the Leek Family Fund and help us make this international symposium a reality, please click here.

Donations earmarked to the Leek Family Fund can also be mailed to the ALS Association at:

ALS Association - Greater Los Angeles Chapter
Attn: Leek Family Fund
28720 Roadside Drive, Suite 200
Agoura Hills, California, USA

On behalf of Kairit and the extended Leek family, thank you.

Note: Videos from our trip to the X-Cell Center in Germany are forthcoming...

Thoughts on the last night in Germany

Kairit's blue eyes filled with tears that fell on her cheeks. We were having dinner in the hotel restaurant on our last night in Duesseldorf. She talked about the impact ALS has had on her life. She was an artist who worked in a flower shop while honing her craft and searching for work. She studied theatre art and glass painting. Finally about five years ago the hobby that brought her joy turned into work that she loved and could live by.

She began illustrating children's books and greeting cards. For several years, Estonia's largest chocolate company, Kalev, hired her to design their Christmas packaging. She taught art classes at the Tartu Art Institute and found satisfaction in having students find their talents through her teaching. She was able to buy a small apartment in a rural area and life was good.

Estonia is known for its cultural activities and Kairit's favorite work was in the theatre where she painted masks and actors' faces. It's in a small regional theatre in the summer of 2008 where she met her partner, Anto Siimson. Anto, who works as a musician and furniture craftsman, was performing in a play. He has been by her side ever since - in the beginning when the struggle to get a diagnosis was so frustrating and painful, and since, acting as a caregiver against what could become insurmountable odds. He's loving, kind, thoughtful and strong, lifting her out of a chair, carrying her when she cannot climb stairs or get into a car. He's a helpmate at home, too, with cooking, cleaning, and whatever else he can do. Most important, he makes Kairit feel beautiful, and despite the muscles that have shrivelled and shrunk, that she, Kairit Krikk is the most wonderful woman in the world.

Kairit's medical experience has been good at Tartu University Hospital except for some confusion as to whether or not she has ALS or MMN (multifocal motor neuropathy, a non-fatal motor neuron disease.) Not all the doctors agreed on the diagnosis (not unusual in cases of difficult diseases in which the diagnosis results from the elimination of possibilities.) Kairit says when she had the IVIG treatment (Nov. 2009) usually prescribed for MMN she was doing better, able to climb stairs carefully and the muscle-wasting did not seem to progress. That benefit lasted until the end of January. However, her next appointment was not scheduled at Tartu until mid-April, and despite her many efforts to get it moved up, she could not.

The stem cell treatment, she thought, was the only option to try and hold off any further damage to her body. She is hopeful that it will help but it may take a few weeks to ascertain what, if any, improvement there is.

I was upset to hear Kairit's story about a Dr. Katrin Gross-Paju who is known as a top neurologist in Tallinn, Estonia's capital. She could use some sensitivity training. She's not unlike some doctors we have in Los Angeles who spend more time on their television careers than paying attention to their patients. I once waited in a well-known female ob-gyn's patient room for three hours...thinking she was dealing with an emergency...when she breezily walked in and said, "I'm so sorry. The front desk should have called you." Turned out the doctor had a last-minute TV appearance. I never saw her again.

Dr. Gross-Paju's office ordered a muscle biopsy done on April 7, 2009. When Kairit called repeatedly to get the results over a period of six months, she was told by the doctor that the results were not in and she needed to wait. Kairit did not know if such a long wait was normal. Kairit had no way of knowing that the lab had sent back the results by April 27 noting the muscle biopsy (a painful procedure) needed to be repeated because the arm tissue was not enough. It had to be done on the leg. It was only when Kairit's older sister emailed the laboratory that they found out the results had gone back to Dr. Gross-Paju's office six months earlier. Kairit then proceeded to have the second biopsy which indicated ALS.

Kairit's final appointment with Dr. Gross-Paju was demoralizing and difficult. When Kairit asked about her options she was told there were none. That's true, there aren't any.

When Kairit asked if she had any help to give, the doctor said, "I can get you a breathing machine."

Kairit: "But I don't have any problem with my breathing."
"You will, and then you will come back to me," says Dr. Gross-Paju.
Kairit: "But what can I do? What help can I get?"
"I can do nothing," says Dr. Gross-Paju, "You are going to die."

Here you have a young woman who has just been diagnosed with the most awful disease...in a country with no supportive ALS services...whose tests were delayed by six months...who had nowhere to turn, no knowledge of the death sentence that had just been pronounced. Some kindness would have been welcome, even in some gentle words, saying "I am sorry for your situation. I would like to help but to date there is no cure and no therapy. We will keep in touch and I will assist as the need arises."

Doesn't take away the shock but helps to cushion the blow.

Kairit's Blog for Estonian speakers

To read Kairit's personal blog, written in Estonian, click here.

Procedure done and now we hope...

Kairit, our family soldier in the fight against ALS, was released a day early from the X-Cell Center hospital. Except for the slight fever last night and a sore neck from the positioning of her head during surgery, she has had no complications.

When I walked into her hospital room at nine this morning, she had already showered, had breakfast, put on a little make-up, and settled into the comfortable hospital bed to watch TV. The doctor had been in to see her and was very happy with her progress.

I gave Kairit a little shoulder massage and we walked (Kairit with Anto's help of course) to the reception area for a good cup of coffee. I met Margeurite, one of the administrators at the center. There are two locations in Germany but the owners are from the Netherlands. Marguerite said many of the ALS patients they have seen have worked in jobs involving toxins. While not everyone who works with chemicals gets ALS, obviously the immune systems of some people

can't handle the poisons.

Kairit said her first symptom was the feeling that her muscles were like popping corn all over her body, especially her legs. They never stopped. The popcorn feeling was intense at the beginning but has abated over the past nearly two years. Kairit was an artist working with paints and pencils but she also worked in a flower shop for 5 years.

Is ALS caused by toxins? Doctors may say they don't know but we think it may be. Our environment is polluted and our workplaces and homes are filled with poisonous substances. We are not the first to think toxins may be responsible for many diseases such as cancer, immune system disorders, or motor neuron diseases. The list goes on.

Perhaps we could deal with the consequences if there were hope for survival but there is no treatment for ALS. Kairit knows that this amazing stem cell procedure she underwent is not a cure. We will have to wait and see how successful it was...but she has at least had a therapy that may bring some improvement if the detoxifying she has done the last several months has helped her, if it's even what's needed. In any event, Kairit - but for ALS - is healthier than she was six months ago. If the new stem cells are viable enough....So much emotion involved as I am

reading the doctor's report on the transplantation:

On 10:03:10 (Mar. 3/10)

stem cells were implanted in general anesthesia via neuroendoscopic

ventriculocisternostomie 3.0ml in high concentration: 1.0 ml in basilar cistern,

1/2 ml in third ventricle, rest in side ventricle an solution intraparenchymal.

We have transplanted 4 650 000* CD 34 cells (Vitality 90.1%)

In the United States they have begun clinical trials to see if the lumbar puncture procedure is safe enough. That phase will take two years. Then phase two another two years...then phase three...and maybe after 5 or 6 years the FDA will sanction this procedure which they are now doing at the X-Cell Center. Why can't the doctors in the USA come here with an FDA official and check it out? See what they do?

My new Canadian lawyer acquaintance who has ALS was also in the intensive care when Kairit was there. He was able to have the stem cell implantation through the occipital area. He was doing well and released to his brother for two days of rest before heading home. We saw other patients as well following stem cell procedures, including two young children. We don't know what medical problems they were being treated for but we can assure the reader they looked no worse for the wear. How well the stem cell implantation works is yet unknown for these patients but others have benefitted.

Surely when people's lives can be improved it would behoove the medical professions all over the world to work together, wouldn't it? ALS is a horrible disease that attacks the muscles, causes them to atrophy, with the most severe patients losing their ability to walk, use their arms or hands, swallow and breathe while keeping their minds intact. I don't care where the best therapy comes from to help my niece and other ALS patients. I don't care if the cure for ALS comes from China, Germany, Russia, Mexico, Canada, or the U.S.A.

I am going out on a limb here...but the lumbar puncture is safe, as is the occipital procedure and the neuroendoscopic stem cell implantation done by skilled neurosurgeons under FDA-type rules and regulations. At the X-Cell Center they use the patient's own bone marrow to harvest the cells. Maybe in the future stem cells from other sources may prove more beneficial but right now this seems to hold hope for some. Yes, it's a private facility and it costs money to do this but Kairit doesn't have anywhere else to go.

Kairit, Anto, and I will spend our next twenty-four hours watching television, reading, snoozing,

eating, and talking about the incredible week we have had in the multicultural clinic. There are people from many countries performing different specialties. The waiting room is just as multi-ethnic and when it comes to health and good care, we all look the same.