YOUR STORY

Sadly, demyelinating diseases still account for the loss of many lives in this country every year. We have added a memories page as a tribute to some of our contributors who have passed away. MEMORIES PAGE -CLICK HERE for some of these stories.

It is our hope by reading about other families who are facing either MS or a form of Leukodystrophy; it will give others hope and strength; also, you can gain a far better understanding about exactly how these diseases affects those who are afflicted with them and their loved ones - than any text book definition could possibly offer.

Here we are featuring, the Pearson Family. I think you will find their story very touching. The following is written in Michael's (the father) words.

THE PEARSON FAMILY

25.4.04

My name is Michael and my loving wife is called Valerie. We have been married since June of 1978 and have seven children.

Our eldest son Osmond was born in November of 1978. His sister Valerie Joanne was born in January 1980 followed by brother Vincent's arrival in June of 1981.We both noted that Vincent's development did not appear to progress as that of his brother and sister and we raised our concerns at that time with one of the practice GP's.

Vincent also had a slight nystagmus and had severe weeping eczema. We did not like the continuing use of steroid creams and ointments or the use of paediatric valergan as a sedative to ease the irritation, so we researched whatever information we could about eczema from support groups.

We requested that Vincent should see a dermatologist and an allergy test proved positive to egg yolk, house dust mite, and animal fur. We changed Vincent's diet to exclude egg yolk and also cow's milk of which we substituted with goat's or Soya milk. Gradually the eczema cleared with only the occasional minor problem.

However, Vincent's development still gave cause for increasing concern. We felt as if we were doing something wrong by asking so many questions, of which must have been equally frustrating for our GP'S

Several long months past by and Vincent could hardly crawl or sit up without falling over. Vincent also had obvious communication problems; he would listen attentively, but had very little speech and would communicate with facial expressions or indicate.

Despite Vincent's problems as a child he received plenty of input from all of the family and every one of whom he became acquainted with. He remains a very popular and well-loved character.

In November of 1983 our daughter Kimberley was born and her development gave no cause for concern. Vincent loved his little sister and interacted well.

One morning whilst I was at work Valerie received a phone call from the health centre. They asked if we would mind if a medical student could come to the house and ask some questions about Vincent. Valerie agreed and the student called to the house that afternoon. During the course of conversation, Valerie instinctively asked "what's wrong with Vincent?" The student replied, "Vincent has Cerebral Palsy". We did not know whether this was his own diagnosis, but we suspect that this was pre-assessed information from Vincent's medical file. Valerie could not answer any more questions and the student doctor felt obliged to leave without giving any explanation of what cerebral palsy was.

Valerie borrowed a medical encyclopaedia from a neighbour and was consequently very upset. Despite the emotional trauma of finding out in such circumstances and without any support available, Valerie still managed to look after the children and still have a meal on the table upon my arrival from work. I could immediately sense that something was wrong. There was not the usual noise of happy children chatting to their mum.

Eventually, Valerie quietly explained what had happened that afternoon. When the children were tucked up in bed and reassured that their mum was all right, we talked. Obviously we were both very upset but we felt that in the first instance we should confirm what Valerie had been told with our GP. It was a long night.

One of our own GP's confirmed that the general consensus was that Vincent did indeed have Cerebral Palsy, and that this would be used as a working label so that Vincent could access the support of therapists. Appointments would be made with paediatric professionals so as to assess the level of support needed.

So our parental instincts proved correct. Vincent did have needs that differed from that of his brother and sisters. Regardless of this, the house was always full of laughter, arguments, trauma, but there was always an abundance of love and happiness. Somehow we always seemed to manage.

In November 1989, Russell was born and did not give any immediate cause for concern; apart from a slight eye squint, which we were told, would hopefully correct itself. Russell appeared to develop a little slower than Osmond, Valerie and Kimberley, but when compared to Vincent's development, did not give us any reason to worry.

Nathan was born in December 1991, and by then we started to become increasingly concerned about Russell, as he now had a notable nystagmus and minor balance problems, becoming increasingly dependant on using his 'toddle-truck' for support.

Nathan had also developed an obvious nystagmus. Our own observations concluded that there must be a genetic element, and we made another appointment to see our GP. They readily agreed that it would be a good idea to investigate it further and wrote a letter to the relevant departments at Newcastle Upon Tyne RVI and General hospital.

Despite an I.U.D. Valerie fell pregnant with Damian who was born in December 1993, complete with the I.U.D. in the placenta. (Vincent was by now around 14 years old.)

The genetics clinic eventually requested blood samples from us all, and the anxiety was immense. Both Valerie and Vincent had a brain MRI scans of which together with the blood analysis confirmed that Vincent, Russell, Nathan and Damian all had an X-linked inherited condition known as Pelizaeus Merzbacher Disease.

Once again we had many questions to ask a very sympathetic geneticist. It was very emotional for all concerned.

Vincent was aged 15 years before he had a definitive diagnosis and we had to consider that perhaps he might not have had this diagnosis at all, had his brothers not had similar symptoms.

It is therefore difficult to contemplate the consequences this may have had with our daughters. One of our daughters does unfortunately carry the PMD gene, and any sons born to her would carry a 50/50 chance of inheriting the PMD gene and suffer the consequential effects. Thankfully, she now has the knowledge of which is incomprehensively priceless and we remain grateful to the medical science professionals of whom presented us with this knowledge.

As a family we have all got through this together. The four boys are all at home with Valerie and myself and are very much loved by all. Amongst all of the equipment, wheelchairs, hoist's, walkers, splints etc. that has taken over the house! There is still the sound of laughter, sibling rivalry of which you would not believe, music blaring from each room, and everything else, which goes along with having a young family! Osmond, Valerie and Kimberley have flown the nest, but our house is very much an open house and they are always coming in and out and helping out where they can. (This may be something to do with Valerie's home cooking I suspect!)

Vincent, who is now 23 this year, is a very sociable young man who loves to get out and about this includes going to the pub! He receives support to allow him to access courses and swimming etc around our local area. He has many friends and we can't count how many girlfriends he has, he is a flirt with the girls! Vincent has had major surgery to correct scoliosis and restore lung function and posture. The main problems at the moment are with either chest or UTI infections. His swallowing reflex also has to be closely monitored.

Russell is now 14 years old and waits for an appointment date for an operation to correct his spinal scoliosis. Russell does get frustrated as he cannot get around as well as he used to. He is very sensitive and thoughtful. He now mainly uses his electric chair, as he cannot stand very well. Russell attends a special school along with Nathan and Damian that they all enjoy.

Nathan is 12 years old. He is the loudest of the boys. You would definitely hear him coming before you see him! Nathan still uses a manual wheelchair but can walk a short distance with his walker. Damian is 10 years old and he has stayed on his feet the longest. He can still take a few steps on his own and gets around the house holding on to things. Damian is the artist of us all. He loves drawing and is very good at it too! Despite limited dexterity.

Nathan and Damian have both had Botox injections to try and loosen the tendons in their legs, as they get very tight, drawing their feet inwards. They do not like this very much and it has had varied effects. I believe that more regular intensive physio would benefit all of the boys of which is my on going concern at present.

The physiotherapist's do a marvellous job albeit with very limited resources thus affecting the time per child ratio.

There is so much that I could tell you about our family but then you would never be able to get to the end of this letter! So I will save some for another day. I have included some photographs for you. And I look forward to hearing from you once again.

Mike & Valerie Pearson.