About Us

"Hello, I’m Pauline mum to twins Tommy and Matthew.  We live in Hockley, Essex."

Hopefully TOGETHER with this site and your feedback, we can achieve some changes to move forward in making things easier both for today and in the future for all of our disabled children and their families.

We hope that by making contact with those in similar situations we can help families realise that they are not alone.

After more than 15 years of constantly battling and dealing with untold health, social, educational and financial issues we know only too well all the challenges you will have to face and concerns you deal with. So we thought it was time to share our knowledge and experiences with others. We will cover all the areas that we have experienced and hope that by sharing this information it will provide those in a similar situation with some guidance.

Tommy and Matthew were born 14 weeks premature on 18th September 1995 weighing 2lb7 and 2lb8 respectively; as a result they both suffer from a number of disabilities between them.

Tommy has Cerebral Palsy which affects his ability to walk and maintain his balance; he also has a number of minor learning difficulties particularly relating to his concentration span. He has had hearing problems, breathing difficulties and up to 18 months ago he suffered with non epileptic seizures connected to fever (febrile convulsions), I hope he has now outgrown these seizures and he has been fortunate not to be confirmed as Epileptic.

Matthew also has Cerebral Palsy which affects both his legs and his right arm; he is unable to weight bear or walk and relies on his powered wheelchair for his mobility needs. The limited use he has in his right arm and hand also affect his mobility. He has limited hand to eye co-ordination and his fine motor skills are very weak hence he cannot write, but uses his computer well to learn both at school and home. He has moderate learning difficulties and is slow to grasp new tasks and information. Matthew also suffers from Epilepsy and is on daily medication to control his seizures – unfortunately this cannot control the absence episodes that he has. Also as a result of his premature birth Matthew suffered from Hydrocephalus which at just 5 weeks of age and weighing only 3lb necessitated him to undergo major neurosurgery to fit a VP Shunt – to date we have had no problems with this (touch wood).

What have we been through?

Seems like hell and you feel that you will never come through it but you do each step at a time - I don’t know how but you manage. The initial shock of the premature birth and all the health issues, complications and life threatening scenarios faced each day at the early stages of life are only the beginning of a long long road to meeting the daily needs of bringing up a disabled child or two! in today’s society.

Health From day 1 – resuscitation, ventilators, blood transfusions, jaundice, needles, nasogastric feeding tubes, oxygen dependency, tests, investigations, hernia operations, lumbar punctures, neurosurgery, adenoids removed, tonsils removed, Grommets fitted, seizures, MRSA, hand foot and mouth disease, botox injections, legs plastered.  

 

Not too mention the numerous medications administered and endless Hospital appointments we have attended (and still attend) for paediatrics, orthopaedics, eye clinics, hearing clinics, speech therapy, ENT, physiotherapy, neurology, dieticians, orthodontists and A&E, Hospitals are like our second home!

Equipment – Kaye benches, Kaye Walker, Meywalker, splints, Pedro’s, Leckey standing frame, manual wheelchairs, powered wheelchairs, Jenx chair, Maclaren major buggy, electric portable hoist, shower chair, urine bottles, syringes, handrails.

Our House - A Big Challenge and a Big Price .....

Matthew eventually out grew the bungalow we purchased in December 2000. Consequently in November 2009 we  moved to a larger detached bungalow with the potential to extend and adapt.

Adaptations to the internal doors were required so that Matthew could move freely without destroying the decor.

Pocket doors were fitted to the lounge, bathroom and bedrooms.

The whole wall has to be removed ... to fit a frame and pocket doors like this ......

        

Our Garden - Weekends of hard work ......

So that Matthew could get from the house to the bottom of the garden, we used 35mm decking and a concrete path.

  

The 84 foot concrete path serves as an area for Matthew to use his walker.