To all parents of children who have Down’s syndrome,

and to those who care for children and adults who have

Down’s syndrome.

Most of you will be adjusted to thinking of Down’s syndrome as a hopeless situation that you can do nothing about. No matter how you would like to help your child you are told there is nothing you can do, or you are told there is no need to do anything. But there is a lot you can do and should do, the first step is to read this letter.

Having a child with Down’s syndrome is not easy, there are problems for all of us. We start out with many concerns for the future, but the most important issue, is how to keep our child healthy. This makes good sense and there are indications that problems with schooling and low IQ are linked to health issues. Keeping the child healthy provides them with a better chance to make their way in the world and do better at school.

Health is a big worry for all parents. Fortunately our children are doing much better in this regard, but I have met people who looked at my son (David) and then told me that they used to have a child with Down’s syndrome but they lost their child to an unexpected illness. When these parents tell me of their life, it sounds like my life. I never suppose that this could not happen to me, I worry that it could, and feel a great sense of urgency to get some research underway. I want you to get the same sense of urgency. The time for research is now, not when some problem effects your child directly.

Some parents will say that Down’s syndrome is not a disease, and the children do not suffer. I think that my child does suffer and he misses out on a great deal of his life. In medical terms his body is not "at ease" and this is a "disease". It is probably a very small upset to his metabolism which is causing his body to not work as well as it should, but the overall effect is harmful to him and the result of that harm is a syndrome. By self definition Down’s syndrome is a list of problems describing an abnormal medical condition. For a lot of new-born babies there are serious heart problems, many will need surgery. There are life threatening problems with upper respiratory distress, these will continue for years until the air ways grow in size. Other serious problems although much smaller in number include a higher than normal incidence of leukaemia (ALL & AML). Floppiness and poor muscle tone is quite usual and these delay crawling sitting and walking. Modern medicine is well equipped to deal with most of those problems which are life threatening. It is important for parents to be well informed and to demand medical attention quickly when there is a problem. With good medical support most children will live a long life that allows them many opportunities for progress and education.

A few parents have become quite upset when they hear that there are problems they have not heard about. They may have been told there were no problems they needed to worry about. But parents need to be well informed in order to respond if there is an emergency and in order to make decisions that can be helpful to their child. Parents (even new parents) are more in control when they have free access to information. Any effort to hide information from new parents runs the risk of putting the child's life at risk in an emergency, and it puts the child's health at risk on a long term basis. The parent has the responsibility for caring for the child not some other person who thinks they know best.

Every parent must assess the needs of their child and investigate the information and opinions available from a range of medical advisors, parental support organizations, and of course other parents. No one has all the answers and any course of action or inaction is going to be to decision of the parents not those who offer the advice and opinion.

Nutritional therapy has been a controversial therapy for about 50 years. TNI is Targeted Nutritional Intervention and this is just the latest development which is cantered around a broad range of anti-oxidants. You can read about TNI on our Website. We do not sell TNI , we only provide information. Some opponents of nutritional intervention want to prevent information on these programs reaching new parents. They say new parents are vulnerable and will grab at anything that might help their child. New parents are supposed to be unable to reach a good decision for their child. Never-the-less, new parents do have that responsibility and they will make those decisions, information is essential if they are to make an informed decision. There is no clinical evidence that these programs work, but this does not prove, they do not work. It only means there is no acceptable medical evidence one way or the other.

In 1995 there was results of in-vitro evidence published in Nature of increased oxidative stress in Down's syndrome.   Brain cells were grown and supported laboratory environment (in-vitro) the DS cells were found to be much less able to survive than normal calls.  These researchers treated the DS cells with antioxidants and this made the DS brain cells as viable as the normal cells. This provides a scientific (in-vitro) basis for the brain injury seen to be happening (in-vivo) in DS and it indicates that antioxidants can prevent this cell damage (in-vitro).  

TNI contains high levels of antioxidants and perhaps most of the claimed benefits for TNI will eventually be shown to be due to those antioxidants. Zinc is also very important to health and growth and there are indications that zinc supplements have helped our children, TNI contains zinc.   We would like to see a randomised placebo controlled double blind trial  underway in the USA to test TNI.  But this will cost about one million dollars and requires a lot of support from parents and doctors. Having a complex formulation of 50 ingredients makes it more difficult to get ethical approval for this study.   

Any parent who wants evidence for or against TNI will usually resort to asking other parents who use these programs. The vast majority will say that it works. By this the parent will mean that they have seen some improvement in their child. When that improvement has resulted in a transformation in the child's health, the parent will usually accept this as proof beyond all doubt. Opinion based on observations is anecdotal evidence.

Anecdotal evidence is used by doctors.
When you visit the doctor, you are asked: "How do you feel, what is wrong with you?" You are being asked to provide anecdotal evidence. This is part of the process for diagnosing an illness and for determining the effectiveness of a treatment.
Anecdotal evidence is evidence, but it is not scientific evidence.

Doctors cant prescribe vast quantities of antioxidants or some other therapy based on anecdotal evidence they have to have scientific evidence that the therapy is effective and it is not harmful. This evidence is developed in a clinical trial called a randomized double blind trial, where some patients get the intervention therapy and others get a placebo and no one knows who gets one or the other. At the end of the trial if those patients on the intervention show a marked improvement over those on the placebo then this is proof that the intervention was effective.  TNI like any other treatment therapy needs to be tested in a double blind trial.

An Antioxidant & Folinic acid therapy to ameliorate the pathology of Down's syndrome. Click here to read about this project. This project has been drawn up at the Institute of Child Health in London it is now underway and the cost is over £500,000. (Update : The project has concluded in 2006 and results are awaited.)

We (The DSRF in the UK) provided the initial £37,000.00 to get the project underway.  We continue to look for funds for this and for other projects.  Perhaps you could help us?  Every little amount is very important. So please join the DSRF and make a monthly contribution.  That initial work was made possible by your donations and there would be no project without that support.

The DSA in the UK signed the contract to fund this project in Oct 2000.  They have to raise that money over the next 3 years so they need the help of all DSA Members. Make sure to tell the DSA you are donating money for this project and it will go into a restricted fund.  

The Down's Syndrome Research Foundation (in the UK)  initiated and funded the preparation of the protocol document for this project.  Many parents tell me to ask the Government for money or they tell me to ask the "Lotteries".  We have done this and have been refused. Our children are last in line for handouts. The government does spend MILLIONS to get rid of children with Down syndrome with screening programs but will spend nothing on medical research to help them.  This is obviously very wrong but parents will have to speak to their MP if they want support for research.

Most of the money given to charities to help children with Down's syndrome is not spent on medical research it is spent on parental support and public relations.  These are activities that would not be needed if our children were getting the medical support they need to grow and develop normally and allowed to have normal lives.  Society discriminates against our children before they are born and discriminates against them after they are born.  We need to fight those problems. But we also need to make their lives more normal with good medical research.  

Parents ask about my experience with our son David, and when we started to use nutritional intervention.  We started when David was age 10.   We used TNI for 4  years.  Initially there was only anecdotal evidence to support the use of these interventions. But since Dec1995 there has been increasingly good evidence of oxidative stress and the usefulness of antioxidants. Now we use Antioxidants supplements (1000 mg Vit C & 1400 iu Vit E),  plus a one a day multivitamin plus minerals, folic acid,  zinc, and Omega 3 oil.  David is now age 17 and very healthy.  But I know we started too late to do much to help his brain development. Starting early is very important. 

When our son (David) was born in 1985. We were in shock, there was the loss of a perfect child and then the uncertainty over what we were now facing. Actually we had virtually no problems except problems we were imagining in our heads.  We got over the shock and then we adjusted to a fatalistic "do nothing" attitude.   Because we were lucky our baby had very few problems so we got the idea there is nothing much to worry about, and we were told by "experts" to not worry and to ignore the people who thought vitamins might be helpful.  Actually that was very bad advice and if we had taken an interest in vitamins David might have been doing even better today.

But even when David had to be rushed to hospital with severe respiratory distress (choking for breath) during a bout of croup we did not understand that perhaps he needed help to make him more healthy. For 2 years he went though similar recurrences of respiratory distress each time he got croup. This was "normal" for a child with Down’s syndrome they told us. We never asked; Why is this normal?

By the time David was age 10 we were ready to ask why? By that time we were experts in seeing our child making slower and slower progress. That’s when I found out about the metabolic abnormalities.

For at least 20 years doctors have known about the theory that our children need nutritional supplements. It was not very well understood why this would be the situation. Some parents used vitamin therapies and made claims of improved health and more normal growth rates. Doctors were more interested in improving the IQ, we now know that improving the IQ was not a very practical objective and it was almost certain to fail. After several short term trials where conflicting results were reported vitamin therapies were discredited and doctors would usually dismiss any useful results as the placebo effect. Parents continued to use these therapies and MSB Plus has been in use for about 15 years with glowing reports of improved health and more normal growth and development. Not a cure of course.

Doctors now know that vitamins and especially antioxidants are essential for good health and these are depleted in our modern day diet. Not so well known is the fact that children with Down’s syndrome have an abnormal digestive tract that cant absorb some essential vitamins, there is an increased need for some nutrients and there is a 50% overproduction of Super Oxide Dismutase which causes very high and damaging oxidative stress. (The SOD/GPX ratio is now known to be 2X normal in fetal tissue from all the vital organs, DeHaan etal 1997). This results in an increased need for antioxidants as dietary supplements for our children, they cannot get all they need from food and they can't eat more food.

Increased oxidative stress will accelerate the aging process (which simply means there is increased cell damage), it will impair the immune system making it very difficult to get rid of colds and upper respiratory infections, it will cause damage to the DNA and this can result in cancer. it will cause a lot of damage to the brain because the brain is 60% fats and these are very vulnerable to oxidation. It will also prevent proper growth and development even though the child could be overweight and certainly not short of food.

In 1995 our David was small for his age but the doctor would say he was "Normal for Down's syndrome" (which really means he was abnormal).

What is NORMAL for Down's syndrome? When the outcome of a disease is documented in detail including "Down's syndrome" growth charts, you know there is the presumption by the doctor or the organization providing these charts that this disease will not respond to any therapy. With Down's syndrome there is a widely held assumption that the genes are mapping for reduced growth velocity and reduced stature at maturity, delayed development at every stage of life, mental impairment, poor resistance to infection slow recovery from infections, a catalog of medical problems are assumed to be quite normal and finally there is a greater incidence of Alzheimer's and a reduced life-span.

Now that we know there is a scientific basis for proposing an antioxidant therapy to ameliorate these medical problems and improve the outcome for the patient. Studying the outcome of the disease process is a very negative approach to our children's problems. None of these health and development problems needs to be Normal for Down's syndrome and we can start to think in terms of fixing health problems that are in fact ABNORMAL.

A therapy that is not based on drugs would be of great benefit to our children because a total reliance on drugs can cause problems in Down's syndrome. Drugs can increase oxidative stress and cause even more cell damage and a slower recovery. Knowing the correct balance of antioxidants and other related minerals like selenium and zinc is crucial and this requires more medical research. Antioxidants are very safe however even in dose rates above the RDA but massive doses are not a good idea. It is feasible to take antioxidants to reduce oxidative stress when you are taking antibiotics.

Regarding growth charts for Down's syndrome. David was age 10 we put him onto the MSB+ program in 1995. This is now called Targeted Nutritional Intervention. TNI for short. In the past 4 years David has started to catch up with his growth and he is 3.6 inches closer to the average (Normal average not Down’s syndrome normal) height for a child of his age. He is still 1.5 inches below the normal 50 percentile.

Normal children start to have a growth spurt around age 14 David is not showing any sign of that growth spurt at this point. But he is on the 90 percentile for the DS growth chart if David's growth rate continues and can only track the 90 percentile for Down's syndrome he will have gained an extra 4 inches in height by age 18. For the first 10 years of his life he tracked the 50 percentile for Down's syndrome so this is a big improvement. David is much more healthy than he used to be and this was the most striking change we noticed when he first went on the MSB Plus.

Click here to see David's Growth Chart

We regard David's present mental status as brain injured from a lack of treatment for those first 10 years. Brain development is very important from birth up to age 8. Then you have to work with what's there and try to prevent any degeneration. We blame ourselves for listening to pessimists and for not being better informed. I have no doubt that in the future it will seem obvious to parents and doctors that our children need antioxidants and nutritional support in order to prevent brain injury. 14 years ago we accepted advice and we did not think for ourselves, but there was not the evidence there is today, and the Internet did not exist. You must make up your own mind on these issues. Ultimately you must decide what's best for your child, not the experts. There is a lot to consider but the information is available.

A lot of time has been wasted by researchers trying to test vitamin therapies. None of these really had a good scientific basis. And those studies were of exceedingly poor quality and should never have been funded or published. It really reflects badly on scientists when they refer to such trials as providing any evidence. But human nature being what it is, opponents and proponents continue to site those trials because it makes them sound like scientists. But they build their case on very shaky ground. They could best establish their credibility by getting a good trial underway.

Our antioxidant study at the Institute of Child Health has a scientific basis. It is a high quality double blind trial with 200 participants (of significant statistical power) of exactly the right age to best benefit from the therapy if that therapy works. The study is very expensive and every parent needs to make a contribution if they want their child to benefit from this research.

TNI is really a much more complex formulation that we can only provide information on and comparisons to average daily intake etc.

Click Here to read about Megavitamins, & to review the ingredients in TNI vs. RDA.

Click Here to read about Vitamins, Minerals, and Supplements

The Down’s Syndrome Research Foundation (DSRF) was started in July 1996 in order to get more medical research for our children. I learned that Rex Brinkworth who founded the organization that became the Down's Syndrome Association had advocated a more positive outlook, new education methods based on increased stimulation from the moment the baby was born, and he developed a vitamin therapy. At that time there was not the evidence of increased oxidative stress but his therapy was based on the work of Professor Lejeune and even today that therapy (cantered on folic acid, methionine and vitamin B12) has a good scientific basis. My collection of information eventually ended up as two thick volumes and this became the basis for two independent systematic reviews of medical research into nutritional and pharmacological interventions for Down's syndrome. Both of those reviews were ready for publication last year and will probable appear in scientific journals next year. They both support the need for a high quality clinical trial.

The Down's Syndrome Research Foundation (DSRF) is not connected with
The Down’s Syndrome Association (DSA). But we have similar objectives.

The Down's Syndrome Association is the biggest (and the best funded) membership organization in the UK.  It has many employees and am office headquarters in London. It provides parental support services and educational and lobbying services, medical research is one of its objectives and this is not a principal objective.  DSA members have to run for office as trustees or lobby if they want a higher spending priority for research. The DSA will say they are a membership lead organization so it is down to the members to decide if they want medical research or not.

The Down's Syndrome Research Foundation is collaborating with the Down's Syndrome Association and Foundation Jerome Lejeune in Paris to fund the biggest research project in history at the institute of Child Health in London and Birmingham England.  This is our Antioxidant research Project that we initiated and provided start-up funding.

We need more cooperation like this because working together we have the best chance of success. We need parents to be very supportive and not ask for benefits for themselves when their children need very expensive medical  research. Everyone has to make sacrifices starting with the parents who will always want the best for their children..

The DSRF is the only charity 100% committed to getting medical research underway to help children with Down syndrome. Other charities have many objectives including activities described as "parental support". But the very best parental support is the support we give our children - and the children need more emphasis on good medical research.

Why not do something to help? 

 Join the  DSRF - and make a small monthly financial contribution.

Click Here to fill out a membership application form to join the DSRF

The DSRF is a non profit organization.
We need your help to get research underway.

Even a small monthly donation can help us to raise hundreds of thousands.

Thank you for reading this letter, now let's all work together and get some research underway.

Peter Elliott

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