Nikki Stephenson

Bonker's Nikki and the RC Crew

Fundraising for The PACE Centre
£3,900
raised of £3,000 target
by 88 supporters
Donations cannot currently be made to this page
Event: Brighton Marathon 2012, on 15 April 2012
Participants: Lindsey Peters & Michael Wood
The PACE Centre

Verified by JustGiving

RCN 1011133
We provide specialist education and therapy to babies & children with a neurodisability

Story

Hi everyone thanks for visiting our Just Giving page.  Those of you, who know me, you will be aware that over the last 2 years I have been on a bit of a diet & fitness journey:

• Feb-10: Joined Lindsey Peters, Rosemary Conley Diet & Fitness class weighing 16stone 3lbs!

• Feb-10: Started cycling to work & home 3 times a week (7miles each way), and attended 2 of Lindsey Peters Aerobic classes a week.

• Sep-10: Lost 3 stone now 13stone 3lbs

• Apr-11: started to run – just 2-3 miles a couple times a week, and now down to 12stone 3 lbs

• 1st May-11 (my b-day!), 4 weeks after I started running, my lovely husband Craig, swapped his entry in the Letchworth half marathon over to me, as he was injured!!  I was determined to make it even if I had to walk, so I was chuffed with myself when I got around in 2hrs 15mins.

• May to Dec 2010: continued to entered several running events from 5k to 13.1miles.

• Nov-11: Lost 5 stone now 11stone 3lbs and 60 inches!! (10” around my bust & 15” waist).

Quite a few of my friends call me “BONKERS”, and I have to agree with them. To celebrate my first anniversary of putting on my running shoes I have entered the Brighton Marathon on 15th April 2012.

Now, I am not the only mad one here, because the lovely Lindsey & Michael who have been such an amazing support & inspiration to me over the last two years are also going to run.

This will be a huge challenge for us all, especially as the furthest any of us have run is 13 miles, but I am sure you will agree it will be totally worth it as we are doing it for a little guy called Freddie who can't do any of these or any of the things we all take for granted each day.  His educational therapy, to improve his quality of life, is very intensive and very costly, as a result, and we all wanted to help him.  Please read below and you'll see Freddie's story and I hope you'll agree why we just had to do it for him............

To those that know him, Freddie is a bright, happy, vivacious and loving little boy whose bravery in the face of adversity overwhelms and humbles us at times. 

Despite all of this, life for Freddie is naturally not without its challenges and difficulties.  As a result of his condition (congenital bilateral perisylvian polymicrogyria) Freddie has global developmental delay and intractable epilepsy.  His poor gross and fine motor skills make simple tasks such as sitting, walking, independent movement, using his hands etc extremely hard for him and he is dependent upon others for all his needs.

Freddie attends the PACE Centre in Aylesbury, Buckinghamshire full time. Their principles of teaching are based upon the foundations of Conductive Education.  We have found this repetitive, holistic, trans-disciplinary approach so effective in dealing with Freddie’s problems and have noticed a tremendous difference in him and how much he has developed as a result.  He receives a tailor-made programme delivered by specialist staff who provide a learning for life through the intense and integrated therapy and this has proved to be absolutely fantastic for him.

Since he began at the centre in 2006 (at the Parent and Child Group, where they educate the parents about best practice at home) he has learnt such things as how to take some steps (with facilitation) pedal a trike a short distance, make choices through eye pointing and vocalisation and use a potty to open his bowels (we’re still working on wees!) and his huge sensory processing problems are constantly monitored and addressed.  As a consequence he has become a more independent, outgoing and content little boy with the dignity to be more in control of his life.

As you can imagine, however, this type of education does not come without a price (especially as every child has one-to-one help and facilitation, as well as various therapists throughout the school day there) and unfortunately we receive no statutory funding for this.  Our Local Education Authority does not accept the merits of Conductive Education (or sending a child out of its' local borough to receive it) and therefore we need to fund Freddie’s education ourselves.

The Local Education Authority have always been disparaging about Freddie's achievements and are quick to highlight them as ‘infinitesimally small,’ and focus on the things he cannot do.  Whilst what they say may be true we have always chosen to celebrate his accomplishments as monumental triumphs and refuse to accept their opinions, believing he has the right to an appropriate education no matter what.  We have, therefore instead, opted to keep Freddie at PACE where he is happy and learning and safe and secure in a familiar environment with a small group of children with similar difficulties and learning at a comparable rate. 

Consequently, as this places a huge financial strain on us as a family (we have three other children younger than Freddie) we are now in a position to have to rely on the benevolence and kindness of people who may be able to assist us in this plight and to see if we can gain any funding towards the costs of the Conductive Education.  Keeping Freddie at PACE, costs tens of thousands each year and so we would be eternally grateful of absolutely any donation.

As a result of the centre and all they have done (and continue to do for him) we have a changed child.  We have been able to transfer his newly acquired skills successfully into the home environment and this all makes us feel so positive about the future no matter how much adversity we may still have to face.  Freddie thrives at the PACE centre, and we see his achievements as remarkable. It would not be fair to take this wonderful opportunity from him.

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About the charity

The PACE Centre

Verified by JustGiving

RCN 1011133
We want every child in the UK with a neurodisability like cerebral palsy - and their families - to have access to learning and life changing therapy, aligned with our Pace approach. Our specialist clinical, education and therapy teams work with babies, children & young people from 0-18.

Donation summary

Total raised
£3,900.00
+ £376.00 Gift Aid
Online donations
£1,570.00
Offline donations
£2,330.00

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