CLARA’S STORY – a journey of Hope

Our experience of Down`s Syndrome - and it`s practical effects

Have you ever thought how you would cope if your baby was born with Down`s Syndrome; how would it affect your life and that of your family? I am going to share with you some of the effects Down`s Syndrome can have and how you can help your child. This account gives you an insight into a child’s life with Down`s Syndrome and the joy it can bring.

Down`s Syndrome occurs because the child has an extra chromosome on the 21^st pair. Every cell in the body of a Down`s Syndrome individual has forty seven chromosomes instead of the normal forty six.

This can cause extra free radicals (free radicals cause damage to cells and tissue). The consequences are that development (in every area) is slower; and specifically the immune and endocrine (hormonal) system is underdeveloped. All of this impedes the child’s development and in particular motor control, learning and speech. I am going to tell you a little about our experiences over the last ten years and the benefits that we have discovered as parents.

Clara’s arrival

We had three other children before Clara came along.

I had no idea that I was carrying a baby with Down`s Syndrome. Clara was born on the 14^th November 1996 and shortly after her arrival it was obvious to the midwife that she had Down`s Syndrome. We did not know at that stage that Down`s Syndrome also brought with it other health issues.

Phil and I are both Christians and know that God sent her to us, and we were determined to do our best for her. We must leave the future to Him. Clara had two older brothers and a sister and is loved by them all.

Clara came home from hospital and within two days she began to develop a cold. I therefore gave her a couple of homoeopathic remedies (aconite and phosphorous). Clara seemed to respond well to these but as the week went on her chest became tighter and tighter. She suddenly went blue and was rushed to the local A & E in Worthing. She ended up in Guy`s Hospital in London.

The hospital was very supportive and gave us a lot of help. They found that Clara had a double hole in her heart and she would need to have this repaired over the next few months. She was a sick child but after being at Guys for ten days made a good recovery and came home. They said that she would spend a lot of time in hospital until she had her heart operation which they were planning to do within six months. She had been on oxygen and would have to go back on it each time she had a cold because this affected her breathing. Her problem was AVSD (double hole in the heart) which means that the blue and red blood was mixing up.

We continued to administer homoeopathic remedies and then a friend of mine recommended Aloe Vera. I told her, somewhat indignantly, “this is a very sick child - a pot of Aloe Vera will not do any good". She said that she knew of many people with heart murmours who had been helped. I told her “this isn’t a heart murmour but a hole in the heart and she will need surgery”. I really couldn’t believe Aloe Vera could help. However I gave a little bit of Aloe Vera in Clara’s tube every morning and when she had her last feed at night. Clara was quite blue before I gave her Aloe Vera and she used to have a lot of fast breathing turns during the day and night. Shortly after I started her on Aloe Vera I began to notice that these fast breathing turns became less, and then disappeared altogether. The dark circles around her eyes began to disappear and her colds became less frequent. I had to eat my own words regarding Aloe Vera!

Guy’s hospital has a very good Peadiatric section and they actually visit children at home. Three weeks after she came home they sent someone to see how Clara was doing. They said “we don’t know what you are doing but what ever it is it has made an awful lot of difference to Clara”. We continued with Aloe Vera and went back to hospital when she was three months old. The doctor said he could not believe the test results. Clara was putting on weight and really doing well and growing in every way. They decided they would not operate on her heart at this moment, but they would wait until she was older because it would be a much easier operation.

Six month`s later the doctor said he could not believe that while the top hole in the heart was still there, the bottom one had closed. When she was three years old they repaired the top hole surgically.

I started Clara on an imported multi vitamin/ mineral complex at 9 months old, but carried on with the Aloe Vera until she was five. She had been on vitamins which I had bought locally but no one did a natural package that would help children like Clara with Down`s Syndrome. Children with Down`s Syndrome have a lot of extra free radicals in their bodies. From the time of conception these free radicals travel around the body slowing the child’s growth, development and functioning of the immune system. This is why Down`s Syndrome children develop slowly; tend to be well behind their age group and are unable to keep up with normal children. They cannot get involved with their peers in the same way. I am convinced that if we had not helped her, she would be not as healthy today.

Vitamins and Minerals

There is clear evidence from our experience that anyone with Down`s Syndrome should be using a broad spectrum, food matrix vitamin and mineral formula, from the very earliest days. Please note that not all Vitamins and minerals are equal – they need to be plant sourced and not synthetic or ground up rock.

Based upon my own research I started Clara on vitamins and minerals when she was nine months old. I used a vitamin, mineral and amino acid formula and have seen lots of benefits; the most noticeable being the reduced reliance on antibiotics. Clara had far fewer colds, and was a lot healthier. I can remember very clearly my husband saying on a journey back from Glasgow when Clara was about 2 years old. She was running around and enjoying life and he said:

If we hadn’t put her on vitamins and minerals

She probably wouldn’t be the little girl she is today”.

Clara still uses vitamins and minerals today and I will ensure she stays on them for life. We had a blood test carred out several years ago which showed that Clara still struggles to absorb the elements she needs.

Glyconutrients

This word may not be familiar to you but please read on. I would say that since Clara has been using Glyconutrients she has not needed the same high dose of multi vitamins that she once did. I will go into more detail later, but in very simple terms Glyconutrients are biologically active sugars that support the body’s ability to function correctly. The evidence in Clara’s case is unmistakable. Though Clara did well on the vitamins she still had sticky eyes and a running nose all too often, which cleared up after being on the glyconutrients for nine months. Today Clara is ten years old and has had a much better immune system; and is having fewer colds and has developed as you would expect a 10 year old girl. These things all came into their own after taking the glyconutrients. Her speech has also improved and is improving everyday. I am not saying that you do not need vitamins or minerals; what I am saying is that the glyconutrients are enabling the body to correct many things and give the vitamins more of a chance to work. (We will cover more of this later.)

When Clara first started the vitamin and minerals she had very few colds. However, when she started school she picked up a lot of colds and had a constant runny nose and was off school a lot. I also had her tested for heavy metal toxins and Clara was found to have a seriously elevated level of lead, mercury and one or two others toxins. Her lead levels were very high which was not helping her speech or her immune system. We put her on a regime which helped clear out some of the metals and we have seen the levels reduce by 60% - and we are still working to reduce it further.

At School

Clara started to pick up lots of colds, and she would always have very sticky eyes, which would not open in the morning. If you are squeamish it’s probably best not to read the next part! She was constantly sneezing and getting rid of lots of gunk in her nose which was not very pleasant for her teaching assistant to contend with. When Clara had a cold she would not think of putting a hankie up to her nose; if she sneezed she would sneeze and it covered everything within range. Not pleasant for anyone! So if she had any bad colds I had to keep her at home as she was passing germs around at school. On average she would have up to 5/10 days per term off due to colds. Today Clara does not have much time out of school - perhaps a day or two per term but no more.

Clara also had bad bouts of Diarrhoea at school; it is a common feature with Down`s Syndrome children as their digestive systems do not work as well (another reason for slower development). In order to get the best digestion/absorption of food you really need to feed the gut with good bacteria. After a course of antibiotics it is beneficial to take a course of multiphase enzymes . In simple terms Probiotics and Enzymes are essential for Down`s Syndrome children and adults, and need to be the most powerful you can find and used constantly.

Eating

Clara’s school finishes at 2.30/3.00 pm and they have a really quick lunch time which means I was limited in what I could give her for lunch. She would have about 15 minutes to eat her lunch but she is a slow eater and this gave us some problems as to what to give her to eat. I was inclined to send crisps and things to make it very easy but this meant she was not getting the good diet she needed. The midday meal for Clara is her main meal of the day and she eats that well. So now I give her mainly a sandwich of brown bread and ham and a selection of raw carrot and fruit.

At the beginning of 2005 we felt we had done all we could for Clara and yet I knew there was more that we needed to do. I made some changes in the early part of this year, knowing that we were in the throes of getting Clara from first school to middle school in September. I knew the challenges would be greater for Clara and but desperately wanted our daughter to go through main stream schools. We believe that children with Down`s Syndrome do better growing up in the mainstream environment rather than sending them to a special school which can isolate them from the real world. So middle school it was to be.

About two years ago someone introduced me to Glyconutrients; being inquisitive I had a look on the internet and I concluded that as I use vitamins and had seen good results, I couldn’t see any obvious benefits. There appeared to be little benefit in spending more money – I did not believe we could do any more with nutrition.

Eventually in January 2005 we decided to try Glyconutrients and monitor the results. Within 48 hours of starting to take them Clara started to screech and shout. I could not believe it, and thought this cannot be right. Are they making her bawl and shout? From my experience with vitamin and minerals I knew that you should really give a product six to nine months minimum to see if they work. So despite the shouting we decided to continue. School also said that Clara seemed to have got louder and very noisy which did not help the children’s work, but we decided to persevere and wondered if something was happening in her system. After a couple of weeks she then started to get quieter at school but still shouted at home. From talking to people I found out that glyconutrients enable the cells ‘to talk’ together. We surmise that for many years Clara’s cells have been locked up in that little body of hers and now she is getting the right nutrients the cells are beginning to open up and beginning to talk to one another. This may be why her voice became louder and stronger, and she has energy that she didn’t have before. At the age of nine years her communication skills were well down on where she might be, but she has to express herself in some way so she shouts and screams. This could be a direct manifestation of her body beginning to work as designed and she has got a voice that has been locked up for many years. We have to put up with it until it sorts itself out, which it is beginning to do now after several months. After several months on glyconutrients we are now seeing some very significant changes and believe that there are more to come.

We introduced Glyconutrients and we saw some changes:

One thing Clara used to always have is a runny nose and sticky eyes, and when we added the glyconutrients we found then that her nose completely dried up and she went to school with a clean nose. Her skin is a lot softer, and better. Her sticky eye has almost cleared up. As long as she has the right amount of glyconutrients (3 teaspoons a day) her eye is clear. Which makes life easier for us (school didn’t like the sticky eye and they would frequently send notes home). I would wash her face a couple of times before going to school and then in the playground I would wipe her eye to keep it clean. If we had a windy day I could make sure her eye was clean when she went out the door but by the time we got to school it would be sticky.

School work:

Clara’s concentration has never been fantastic. In years 1 and 2 she was not able to participate much. She has always been keen on books and in the last six to nine months she has begun to make a really big effort now. Her speech has improved dramatically and she has speech therapy each week. She will talk endlessly, she is able to say what she thinks, and she can now put five words together in a sentence. It is not spontaneous but the seeds are there; it is like a baby - when they first start to talk you get a word and then they start to put words together. Clara also speaks very fast so she has to learn how to get the words out clearly. She is getting there which is great and she speaks more at home than she does at school.

Clara is beginning to count. She knows up to ten with out a problem, she can count from one to five easily; if she is playing a game she can manage up to ten or twelve.

Behaviour

Clara has had a few behaviour issues that we have had to deal with. Children like Clara often become frustrated because they cannot get over to you what they want. Signing is very helpful, you often find Down`s children to be good signers. Clara is now ten years old and is in year five in a mainstream school. She loves school and enjoys ever minute of it. She is in a class of 31 children and has plenty of friends. She plays independently with them in the playground. She has a helper with her for her lessons but is increasingly become more independent. She is able to join in with her peers and often works along side them even though she maybe doing easier work.

Clara’s work has improved this year; she did a project on the Tudors and also did another one on the human body. She has received a certificate for her work.

Clara is a real blessing to us all. I would really have to say that it would be good if every family had a child like Clara. Clara is a very endearing child, sometimes over powerful with her love-giving cuddles. We love her dearly. She relies on us and has a lovely temperament. She can get cross and angry. She is so naive and trusting and is not aware of what is going on in the world. She enjoys life to the full and is not aware of things like bombs exploding around the world or earthquakes. Life is uncomplicated for them from where they are.

Sugars that heal

First of all let me say these glyconutrients are not minerals, vitamins fats, proteins; but are carbohydrates (saccharides) and are often spoken on as sugars. They are not the sugar you thinking about, such as we put in our tea and coffee; they are sugars that are needed to help our bodies heal. I going to tell you about eight of these biological sugars, which can help keep our bodies healthy and help to fight diseases; even cancer, diabetes and autoimmune disorders can all be helped by taking these sugars.

These sugars are essential for good health, but they are often missing from modern processed food. We have seen them help our daughter with Down`s Syndrome; but it is relevant for all aspects of good health. Let me make it quite clear, that there is no cure for Down`s Syndrome but some of the features and medical issues that occur can be treated and therefore supplying these essential sugars will give the child a better chance in life.

There are eight essential monosaccharide’s which help to improve cell to cell communication. Research shows that these sugars work in the body in the following ways:

Mannose is a major player in tissue remodelling and intelligence between the cells. It prevents fungal infections, eases inflammation, lowers blood sugar and triglyceride levels in diabetics. It also enhances cellular communication. Sadly it is not available in our diet today.

Fructose helps brain development and improve the ability to create long-term memories. It guards against respiratory infections and enhances cellular communication. Also known to inhibit tumour growth.

Glactose is a great sugar to enhance wound healing. It also inhibits tumour growth and it is spread to the liver. Triggers long-term memory.

Glucose this is possible the most common of the eight sugars mentioned here. It helps enhances memory, stimulates calcium absorption and is a potent fast-energy source.

N-acetylgalactosamine this can be very beneficial to heart patients as they have lower-than-normal levels of saccharide. Stops tumours spreading.

N-Acetylglucosamine is vital to learning. Helps repair cartilages and decreases pain and inflammation. It can also be beneficial for Crohn’s disease and cystitis.

N-Acetylneurominic acid important for brain development and learning. Helps repel bacteria, virus and other pathogens.

Xylose antibacterial and antifungal - helps protect cancer of the digestive tract.

It is interesting to note that these sugars are all found in breast milk. Some are derived from the aloe plant. Because of poor nutrition in our diet today, our immune system is weakening and people are getting sick. Glyconutrients have shown to support our body and improve our immune system giving us better health.

I have found that dairy products can cause problems with Down`s children; many of them cannot dairy products. We have found that dairy consumption has improved after taking glyconutrients. Allergies too can be helped. Since I have been on glyconutrients myself my hay fever has almost disappeared.

A lot of studies have been carried out in the field of glyconutrients and people have experienced help for many different problems.

Here are a few:

Heart disease, autism, shingles, cystic fibrosis, lupus, cancer, multiple sclerosis, diabetes. Glyconutrients are able to heal the body as a whole. I would encourage all who read this story to think seriously about taking glyconutrients.

A visit to BIBIC

In November 2006 we arranged a visit to BIBIC. This stands for the British Institute for Brain Injured Children. We know children with Down`s Syndrome are often slower learners and have difficulty concentrating. They normally learn to read and write but they are often behind with many of their learning tasks. They work at a much lower level than their peers. BIBIC can help all children with disabilities by giving them exercises to help them. This means that your child will need to visit for a three day consultation, and then a further two days every six to nine months. I would recommend this to anyone who has a child with learning difficulties. They went into a lot of detail with Clara, such as what age did she roll over, did she crawl on all fours etc. They looked at her development to see where she is now and go back to her babyhood to see what she did achieve; and then give her exercises to help her to achieve them. They looked at her visual learning, language comprehension, gross and fine motor skills. They also looked at her expressive language and social development, play and cognitive abilities. If a baby has not achieved her target at 3 - 6months on one of these skills, it can cause delays in later life. Clara was found with quite a few gaps in her early development and has been doing exercises to help her close these gaps.

Clara returned to BIBIC six months later after doing the exercises and has closed a number of the gaps. She has made a lot of progress in the last six months. As you will have read earlier, glyconutrients heal the body, and they have played a vital part along with the exercises. What we need for our children is to build them a solid start in life. I left it ten years before I started this programme. My advice to anyone reading this story is to start as soon as you can. If these early gaps can be filled then it gives them a better chance at an earlier stage, and helps them keep up better with their peers.

For more details on this subject contact me or visit the BIBIC website.

Just in closing I would like to mention that I have known of several people who have benefited greatly from taking these supplements. My daughter recently left of her Plus suppliment whilst away at BIBIC and we paid for it later in the week. As soon as she returned to the supplement within 48 hours she was back to her normal self. My mother who had mild diabetes and thyroid problems was taken to hospital after having a fall. They checked her up, to find that she was clear of both complaints. She had been on Glyconutrients for the last two years.

Glyconutrients are here to help your body heal. Ifthis is your first time of hearing about glyconutrients don’t let it be the last. DO CHECK THEM OUT AND TRY THEM FOR A MINIMUM OF SIX MONTHS. I would be interested to hear from you as to how your health has improved during that period.

ACTION PLAN

Get your child on the following:

The best possible food you can buy – avoid highly processed food as processing removes most nutrients.
Use a plant source food matrix vitamin and mineral complex – ensure that the copper levels are not too high – check with me by e mail
Use glyconutrients every day - Clara uses 2-3 teaspoons/day
Use phytochemicals – plant based antioxidants – 2 capsules/day
Use a phytosterol to support the endocrine system – 3-6 tablets/day
Use a good quality Digestive enzyme and Probiotic – this will support the immune system and ensure better benefit from better nutrition.
Consider using the services of a Cranial Osteopath who specialises in children
Expect your child to grow suddenly and recognise that will bring challenges.
Find a small group of supportive people.