Real Life Stem Cell Stories

Had a son that died after 11 days in the NICU - they had no idea what was wrong, they took him off ventilator - he died 3 hours later. After autopsy, found out he was missing the mylin sheeth (sp?) on his spinal cord. His brain would not tell his body to breath or move.

Here is his story: http://www.homestead.com/2reeseanthonycresto/reeseanthonycresto.html

Alison C., marseilles IL, August 4, 2005  |  permalink

Shortly after my cousins first birthday he was diagnosed with neuroblastome, a cancer in young children. He was given only a small percentage to live, but because of treatments at St. Louis Childrens Hospital and a STEM CELL Transplant, he is alive today and turning three in a month! Please support stem cell research, it is developing and it is helping to find a cure for so many diseases and illnesses, and without it, we may not have saved my little cousins life. So please, support stem cell research, who knows, one day it may save your life, because stem cell research SPElls HOPE!!!

Amber B., Brighton IL, April 3, 2007  |  permalink

My youngest son Danny has had juvinile diabetes since the young age of 3 1/2 years old. Since then he has been on 6-8 fingertip blood tests per day, 2-6 insulin injections per day, and plenty of watching what he eats, and when he eats it.

When first diagnosed, Danny would cry at every blood test and insulin injection. He would try to delay it by telling us he had something to tell us. When we waited and asked what it was he had to tell us, he would shrug and say I don't know and then the whole routine would start again. It was as heartbreaking as it gets trying to explain to basically a baby why he needed to do these things.

At the very young age of 3rd grade he did his first injection by himself. He was very proud, and we celebrated by going to a fun center. Nothing is the same when your celebrating with someone who has diabetes, at least not to a child. The sweets and snacks have to be carefully worked into his diet and covered with the correct amount of insulin to avoid low and high blood sugar results.

The times Danny suffered night time low blood sugars were many. He would make some noise which woke me immediately, and when I checked his blood sugar it was usually in the 40 range. Unfortunately, by that point he was uncontrollable. He would fight by swinging his arms, kick his legs, and clamp his jaw tight like an animal trap. I would literally have to pry his jaw open to get the drink in, all the while trying to fend off his fighting. When his dad was in town, he would help hold him during this ordeal. However, when I was alone, which was many times, I took several blows forcing him to drink juice or sugary gel. I wish I could say that was the end of the ordeal. Once his blood sugar was on the rise he was sick to his stomach. One needed to keep his juice or sugar down at least 10-15 minutes in order for it to start working on raising his blood sugar. But so many times the nausea resulting from the low would take over, and he would lose everything I'd given him too soon to have worked for him. Even if I did manage to keep it in long enough, he would be nauceous, have an excruciating migraine, and absolutely miserable until usually the next evening. The following day he would simply lie on the couch and now deal with high blood sugars all day from what is called a re-bound effect. We would have to check his urine for Keotones, to be sure he didn't go into what is called Ketoacidosis. Though many times he had high keotones in his urine, with much monitoring, and lots of extra insulin we were able to bring it under control before it made him sick enough to go to a hospital. We had medicine to give him for the nausea and vomiting, and they did work eventually, but not before throwing up several times first and just plain feeling miserable.

Then there were the times he had sports, which he was very much a part of. It took near constant supervision on our part to be sure when he was still quite young that he had plenty of snacks and juices with him to make up for the lowering blood sugars exercise produced. There were several times that the exercise and heat combination were too much, and we needed to take him home because he was feeling so bad.

Of course then there were the low blood sugars that didn't respond to the oral treatments we gave him, or that we couldn't get him to take. For those times, it required a glucagon injection. This is a shot with a needle the size of a penicillain or flu shot. Now they have kits that the glucagon is much easier to mix, but in the early years we dealt with attempting to push this big needle into a bottle, withdraw a solution, and then take the needle into another bottle to mix the two ingredients. Attempting to get the glucagon withdrawn was quite another experience. We would then literally stab it into his upper thigh as instructed and squirt it in. This stuff worked very well within a very short time, however it had the negative side effect of making him vomit afterwards. This vomiting could linger for quite some time, and again, he always suffered a migraine which kept him home from school.

As time went by, the severe low blood sugars became less of a problem since we were usually able to catch them before they became so bad. We kept a box of snacks, juices and his insulin supplies at school for emergencies. He used those many times through out his primary school years.

Now he is a young man who just turned 21. He goes off to college like everyone else, except the concerns are quite different for parents of a child with diabetes. We still have the same concerns as any other parent: the binge drinking, the lack of a schedule for eating, the junk food, lack of sleep, etc. However, those problems for diabetes are twice as serious, and quite scary. Needless to say, children with diabetes also rebel, and are quite tired of doing everything they have always had to do to stay healthy. They start checking less, eat way more junk food, and drinking. Needless to say, this wreaks havoc on their blood sugar control, which can lead them inyto s hospital room. In fact, Danny's first year in college, not even a month into classes was his first experience with having too much alcohol. Luckilly his friends all knew about his diabetes and rushed him to the hospital where he ended up spending the night in the emergency room on an IV. It wasn't alcohol poisoning, it was simply the result of drinking at all that caused his blood sugars to go haywire.

The summer between freshman and sophmore year landed him in the same trouble...almost. He was at a party and started doing a few shots with beers and thought he could handle it. Luckilly, his best friend got him to stop but not quite soon enough. Danny ended up throwing up, and his friend brought him home and told me what had been taking place. I spent the entire night checking his blood sugars, and giving him insulin and juice when needed.

Danny made it through his junior year without any trips to the hospital for his diabetes, though he came very close one time. To say he wishes he could have just one normal day with no shots, no schedule, no low or high blood sugars, and no testing his blood is the understatement. However, there are no days off from this disease, ever.

Danny has tried the pump but it just didn't work out for him. He is very thin, and finding a place to keep it safely in place was a challenge we never over came. In fact, in the first month of the pump he ended up with ketoacidosis so bad that he couldn't even move himself out of his bed. Apparently if there is simply a kink in the tubing, but there is still a slight flow of insulin, the pump thinks everything is alright. Well that is what happened to Danny that night, and he was so sick is scared me to death. We called the paramedics since we couldn't move him ourselves. After a morning in the emergency room on an iv and anti enemic because of throwing up so much, he was finally able to come home. This event happened during his senior year in highschool.

Right now Danny just wants to be like everyone else he's with, though to his credit, he takes his meter and insulin everywhere, and does what he is supposed to do even if it isn't exactly when he should have done it. Though his A1c test that determines the blood sugar control he has been in for the past 2-3 months is slightly high at 7.9%, it is not a bad reading for someone in college, or at least his endocrinologists has assurded me of that. However, the fear of the high A1c grates on parent's minds. We know what can happen down the road to this young man we love so dearly if he doesn't come around and start really working to get his A1c under 7%. The complications he could be facing later in life are mind boggling. To name a few of those complications: blindness, kidney disease, loss of nerve feeling which can lead to unknown infections, especially on the feet. These infections can lead to gangrene, and later amputation. Danny will be more prone to heart disease and stroke than non-diabetics, and the list really does go on and on.

Now we are dealing not only with the fear of complications in Danny's later life, but whether or not he will be able to find a job that will insure him since it will be impossible for him to get insurance on his own with this pre-exisiting condition. We have already resigned ourselves to taking care of these bills for him in the real possibility that he won't be able to get health insurance. It then causes us fear of what would happen if my husband should lose his job, where we receive our insurance right now.

As you have read, having diabetes is a bitch. Not only do you have to do everything as right as possible to achieve normal non diabetic blood sugar readings, but then it is no guarantee he won't develop complications.

When I first started hearing of stem cell research I knew that this was the best hope for a cure for diabetes, along with the many other chronic diseases people have. Yet, because some people feel a clump of cells that are just fertilized and haven't formed anything close to resembling a human being are in their opinion a human being, all chronic illness sufferers are made to suffer longer. These people have got the president's ear, since he knows if he please them, they will keep him and those that follow him with these extreme beliefs in office. It isn't until one of these people have a loved one come down with a chronic illness that they see how devastating it is, and almost always have a change of heart. But the damage is done, they have worked to put this heartless, egotistic, superficial man in office. A man who doesn't believe in science, and can't pronounce the most basic words of the english language, but somehow this man knows what life is or isn't? Bush is obviously using these people, and yet they are too mezmerized with him to see it. These are selfish people, who want everyone to believe the way they do, or else everyone else is going to hell.

Danny deserves better then this, as do all who suffer like him. With such a simple solution staring scientists in the face, yet they face being restrained from experimenting with stem cells, is nothing short of criminal. Just what other diseases could stem cells cure? Some times I wonder, and I don't belive it is irrational, if big pharma isn't behind some of these peoples irrational thinking and definately behind bush's decisions to not allow stem cell research. Afterall, big pharma doesn't want a cure for any diseases when it can simply continue treating the diseases with the many drugs they make while raking tons of money greedily. Sad and pathetic indeed.

Annette M., Lombard IL, July 7, 2005  |  permalink

My grandma had the familial form of Parkinson's disease. Her sister also had it. I had a severe head injury. People with head injuries have a greater chance of developing Parkinson's disease. Stem cell research could provide a possible cure for Parkinson's disease. My sister has and my grandfather had diabetes. Stem cell research could also provide a cure for diabetes.

I do not want to die of Parkinson's disease. My grandma did. She lost control of all her involuntary muscles. She could not swallow saliva and drowned. I do not want that to happen to me. I already came through many trials after I survived a head injury. Also, I do not want to develop diabetes. It is hereditary.

Stem cell research could provide a possible cure for those and other diseases. The people who do not support that form of research are saying that those of us who suffer those conditions deserve to die of them.

Catherine C., Creve Coeur IL, January 9, 2007  |  permalink

My son Wayne was in the ARMY when he had a car accident that left him paralyzed from the chest down. He lives life in a wheelchair, coping daily with bowel, bladder and sexual dysfunction. It's been 8 years now, and has profoundly changed his life and that of his family. It's changed him politically too. For the first time, during this past election, he voted against the party he's voted for previously and the deciding issue was stem cell research. I'm not as optimistic that my son will walk and have a normal life again. I am very optimistic that a cure is out there somewhere, and will be available someday, and I feel so strongly, as a mother and as an RN, that we cannot be close minded. We cannot stop progress. We must continue to research, to explore all promising treatments to find a cure for spinal cord injuries.

Chriss H., HP IL, June 11, 2005  |  permalink

Hello. My name is David Abell. I was diagnosed with ALS "Lou Gehrig's Disease" in June 1996. I was 29 and serving in the US Navy when my Naval career, marriage, and life as I knew it were destroyed by this devastating disease. I have had to adapt to being paralyzed, ventilator dependent, fed through a feeding tube, and requiring 24/7 care from family and hired caregivers. I refuse to give up.

ALS, more commonly referred to as Lou Gehrig's disease, is a progressive, fatal neuromuscular disorder that occurs when motor nerve cells cease to function and die. While in most cases a person's mind remains sharp and alert, voluntary muscle control becomes completely lost, often resulting in paralysis, loss of speech, and eventually breathing function. Stem cell research is sorely needed to battle ALS & many other diseases.

When Lou Gehrig was diagnosed more than 60 years ago there was little known about ALS and no treatment. Sadly that is still the case today with only one FDA drug (Rilutek) approved that does little to stop this horrible disease. However scientist today believe stem cells may be the breakthrough that can lead to treating or curing ALS and many diseases afflicting millions of Americans.

I don't believe that embryonic stem cell research is abortion which seems to be why it's been politicized. These tens of thousands of frozen embryos have never been in a womb & almost all will be destroyed anyway. Unless many women are willing to save all these frozen embryos by bringing them all to life via their wombs I think they are better to be used to help humanity. I also believe that God has given us this knowledge to help ease suffering. I hope you agree.

Unfortunately politics has made a political football out of this issue. Instead of letting responsible scientists study the possibilities of stem cells Politicians have hampered scientists making it impossible for them to proceed and forcing many to pursue this work overseas.

Human embryonic stem cell research and the ability to make stem cells by nuclear transfer (cloning) does not involve the cloning of an individual (I do not support human cloning) human being. Today, we stand at the gateway of a tremendous medical breakthrough and it is challenges like this one that will change the course of medical history.

A decision by our leaders to allow such research would not only change the lives of future generations, but would also allow you to benefit the lives of those currently living with neurological and other ailments. Millions are depending on you; are you going to let them down?

Again, I urge our leaders to adopt a resolution allowing for public sector stem cell research along with additional Federal Funding for neurological research and trust that you will make the right decision. I hope that you will consider the millions of Americans who are suffering and may possibly be helped by stem cell therapy.

Thank you,

David Abell

"I might have been given a bad break, but I have an awful lot to live for."

--- Lou Gehrig: July 4, 1939.

David A., Oswego IL, June 3, 2005  |  permalink

My son inlaw, who I love just like a son has als, I feel like if this goes through if there is enough time it could help him

diane m., Sidney IL, July 31, 2005  |  permalink

My son has Primary Lateral Sclerosis, which is a form of ALS, the difference being that PLS only affects the upper motor neurons and ALS affects the upper and lower motor neurons. My son's life expectancy is normal, but in two years has almost lost the ability to walk and his speech is extremely difficult to understand. He is married and has a 5 year old son and a 3 year old daughter who will never remember what he was like prior to this disease. The best that they can hope for is that he will be able to communicate with a voice machine.

The promise of stem cell therapy is the only thing that keeps me strong. I know that they have had some success in China, but the cost is $30,000, and is tempory. I know that eventually they will find a cure for his disease along with ALS through stem cell research. My son has more time than the patients affected with ALS and I can truly feel their pain along with their grieving families. This is their only hope.

May God forgive Bush for his short sightedness and his inablity to comprehend the depths of despair of these people.

Gail R., Evanston IL, July 6, 2005  |  permalink

One of my best friends, Cyndee has a son, Matthew who has MD. I remember in 1990 when he came to my home as a four year old. He was like any other normal child at that age, running, jumping etc. Now in his twenties, he is wheel chair bound, and is in need of constant help with every small and large act that we as healthy people take for granted. Two weeks ago he was in the hospital with another bout of pnemonia which is happening more frequently as he ages. He didn't want to eat anything because he would start choking so his weight started to drop.

I remember a few years ago when Cyndee told me that trying to lift him by herself had gotten impossible. The last time she tried to get him out of the bathtub she couldn't support his weight and dropped him, causing one of his legs to break. Think of the guilt and anguish she must have felt when that happened.

Cyndee or her husband has to get every two hours during the night to turn him in his bed, yet they do this without complaining.

It's very difficult to watch your child's body deterioring little by little. Think how frightened you would be if that were your child.

I cannot believe President Bush, if subjected to all the struggles, pain and indignities Matthew has had to go through each and every day, as well as what his parents and sister have to witness, would not be in favor of stem cell research. I do not understand his thinking! It's almost al if he has no feelings for what others are going through.

It causes me great sadness as well as anger that he has so much power over the lives of others!

Please think of all the Matthews in the world, have compassion and support stem cell research.

Jacqueline R., Chicago IL, April 3, 2007  |  permalink

I have been a diabetic since I was about 4 years old. I am now 41. I have had excellent control of my diabetes for a number of years. However, when I was diagnosed with the disease there was not nearly as much known about diabetes as there is now. Unfortunenately, I have had some damage done to my body. My kidneys are losing protein, I have high blood pressure, and I have had several laser surgies on my eyes. I also have some slight neuropathy in my arms. I am a musician, writer, and avid film buff and I am at a loss to explain the effect that losing the function of my eye-sight,losing the ability to play music, or more importantly, losing my kidneys would have on my life or my loved-ones lives. I would gladly continue to live as I now do with these minor ailments as opposed to a translplant. I have witnessed first-hand how expensive it is to obtain translplant medications. I have also witnessed first-hand how debilitating transplant medications can become to the human body. My brother had a kidney/pancreas translplant nearly 10 years ago due to type 1 diabetes (also contracted when he was young)and he now struggles to find employment and insurance coverage. He also struggles with his translplant medications as they begin to show their side-effects and attack his body. Please, continue to fund and support stem-cell research. It would save untold lives and provide many with hope for a better future. God Bless.

James M., Sycamore IL, July 21, 2005  |  permalink