Graham and Liz Harker

My husband and I have been in your world.  We understand very well the lives all of you, as parents, and as individuals with Tuberous Sclerosis, are living today. 
On 20 September 1978 our fourth child James-John was born.  We had no idea that TS existed.  He was a beautiful child and it was not until he was almost seven months old and beginning to exhibit daily seizures that we realised he was not like our other children. We had questioned those white patches of depigmentation on his back and the disappearance of those early smiles but Bristol hospital confirmed our fears with a brain scan. JJ as we called him had in fact been born with a congenital disability.  
James-John went on to live another seventeen years. He never learned to walk independently, to talk at all, and was doubly incontinent. He had somewhere between one and twenty seizures day and night throughout his life. 

What do you do when you realise what you are facing? First I think we grieved for the life that he (and we) might have had.  On the day of diagnosis we sat in a layby after leaving the hospital, we held one another and cried.  “We must do all in our power to make life as normal as possible for the other children” we declared. And we also vowed to always include JJ in everything we did together. To cement that resolve, within days we set off on a road trip to Denmark and the north of Sweden!  
We went along to our very first TS meeting at a Children’s centre in London the in the autumn of 1979.  By now we had made contact with Janet Medcalf who was the incredibly amazing, wonderful Secretary of the TS and a support to many of you here.  Her daughter Georgina was a couple of years older than JJ and we became firm friends until Janet died and are still in touch with her husband David and Georgina today. 

What could we do?  What all those parents present that day realised is, it was up to them! If anything was to be done to further the awareness of the condition and gain interest in research we had to be the team to achieve it for future generations.  Ann Hunt, Esther Galbraith and Jean Wilson were those first Mums in touch with one another. It is to this dedicated band of Mothers with inspiration and drive that you owe our gratitude. The James Hunt appeal in Oxford had raised the first Thousands but we knew Research was expensive and that wouldn’t go far. 

Tom and Anne Carter had their own Sally-Anne Appeal. I began to write letters to Charitable Trust.  Helped by my Mother every year we sent off a great stack of begging letters! Graham and I had a garden party and raised another thousand or two... but our notoriety in the small community of Minehead, in Somerset, where Graham was a family Solicitor drew a longterm unexpected windfall. The Ivan Leech 2.8 Million pound bequest has been something which has been behind much of the research funding to the present day. This dear old man was my ‘Cleaneasy’ Salesman!! 

JJ opened up new horizons for us, his parents.  Through our involvement with the Association we have friends all over this country and the world.  I’m sure now with Facebook etc. you are finding friends to share your lives in much the same way. We wrote snail-mail, in what we termed “Baby Mags” to a selection of parents whose babies were born in the same couple of years. For instance Sally-Anne Carter and James-John were in the same “Baby Mag” 

Through the new fields in which JJ moved we trod new ground ourselves. Through him I became involved in Mencap.  I became a regional representative for the TSA in the south-west and his Special school’s Governor. I worked as a lay assessor with Social Services visiting home for clients with learning difficulties.   
Meanwhile Graham joined the panel of Lawyers for persons with Learning difficulties. He also became the Treasurer of the TSA under Ann Hunt and then Tom Carter’s Chair and held the office of Chairperson himself for several years. 

Every day JJ made us realise just how lucky we were. He had no words but ours.  That made us more tolerant, more aware and more caring as a family. We had always to think of him before ourselves, his needs were part of our needs. He was an integral part of our  happiness..... and we were happy.  To see him looking and smelling good, to see a very rare smile even to take him by the hand.... we were proud to be his parents. We felt good about him, and we felt good about ourselves.  I reiterate: it was a privilege to share his life. 

You do your best for each and every one of your children and the TSA was what we did for this one of our children, forever young JJ.  After his death on Good Friday 1996 we made the decision to donate his body parts for research. I also wrote a book of poetry about the grief I experienced on his death.. I read one of those poems on the 21st Anniversary of the TSA.  So today his life lives on helping the TSA and all of you. 

What did we do for the TSA? That’s our story. Now it’s your turn!