Who are we and what do we do


Julie Evens
Sande Nuttall
Frances Denning
Paul Holgate

 
  Julie Evens - Chair & New Parent Contact
I live in Hitchin with my husband Paul and our three sons, Mark age 10, Alex age 8 and Adam age 5. Mark has Down’s Syndrome. He has just started in Year 6 at his mainstream primary school. Over the years Mark has experienced portage, opportunity class, playgroup, starting school etc. We have battled our way through the statementing process (and continue to do so!). It’s amazing to think how far we have come. During the next year we shall be preparing for Mark’s transition to secondary school, an enormous step and a very daunting one!

I believe that a group like Up on Downs is vitally important for families of children with Down's Syndrome.  Other parents can be such a fantastic source of information and they are amongst the few people who really understand what you are going through.

 
  
Sande Nuttall - Hon. Secretary & New Parent Contact
 
I live in Letchworth with my husband Bill and our daughters Marion 8 and Florence 3 in November who has Down's Syndrome.  Like many parents we found the orginal diagnosis traumatic.  We knew relatively little about DS and what little the professionals around us knew seemed to be resoundingly negative but I have been determined to find out more about how to improve Florence's chances in life.

The first couple of years with Florence have been eye-opening: a sort of crash course in NHS, Local Government, the LEA, the politics of disability and pre-natal testing, how charities are organised and various complex medical conditions.  Florence's development has been good but she's had some major health problems too.  Early on we had feeding difficulties and then many weeks of reflux, followed by three hospital stays with pneumonia and more recently a diagnosis of coeliac disease with related milk intolerence.  I'm now on first name terms with every GP in our practice and familiar with four major hospitals.  Like many other parents I have also fought the battle to for NHS speech therapy and am now on the route towards trying to ge a statement.

Balanced information from people with experience-based knowledge seems to be rare.  Parents routinely face misinformation, misunderstanding and unnecessary social isolation.  These are things a group like ours can really help with.  We have access to anecdotal advice, experience and information from other parents.  We can provide friendship and social acceptance.  And we can give our children new social opportunities and have fun together.

 
  Frances Denning - Committee Coordinator
I live in Hitchin with my husband Adrian and our two children, Lydia (born August 2000) and Evan who is 2 years younger.  Lydia has Down's Syndrome.  She is about to move into year 3 of a mainstream junior school.

The support and information I have gained from other parents since Lydia was born has been a huge benefit.  I hope members of the group are able to share their experiences, and in doing so provide useful help and advice to others.  I'm delighted to see the group develop it's social and educational facilities.

 
  Paul Holgate - Treasurer 
I live in Stevenage with my wife Sandra and our three children, Emma age 17, Aimee 15 and Matthew 13, who has Down's Syndrome.  Matthew attends Barclay school in Stevenage and will be starting year 9 in September.  Over the years we have developed plenty of experience and the statementing (including 2 appeals before getting anything like a meaningful statement of Matthew's needs and provision required) and health service processes and hope to be able to share our experience with other parents where possible.

Since Matthew was born we have also established a strong relationship with the Down's Syndrome Educational Trust (DownsEd) in Portsmouth and hope to be able to pass on information we have picked up, where possible.

I am also a qualified accountant and keen to use my skills to assist Up on Downs group with its finances and record keeping.