Charlie’s Challenge

Update posted by CharliesChallenge On May 15, 2015

Some little bits of Charlie's Challenge...

Hers 'N' Sirs did their 24hr Haircut-Athon and raised 2.5K! Verity-Jayne May, Lauren Bennett and Annie Wozencroft started at 9am on Sat 9th and cut all the way through till 9am Sunday! They also did a raffle supported by lots of Messingham business', especially Marie Lynaugh at the Green Tree with some great prizes that Charlie drew on Sun am.

Lyndsey Skinner and Becky Aynsley completed the North Lincs Half Marathon and raised 500 between them!

With a little help from Motability and John Roe Toyota we got a new car- we were very concerned about people thinking we were spending money from Charlie's fund so although we're entitled to Motability we wanted to make sure people knew so we had decals put on the side-- nice bit of advertising for Motability and John Roe too...

A friend decided he was shaving his beard and hair of for sponsorship so i joined him in solidarity! Dan Ryder, from Disney Ward at the Hospital, raised 500- he did have a lot of hair.

We do still have things in the pipeline- the early years practitioners at Mels Totstop Day Nursery are doing the Tuff Mudder in Leeds this weekend. Their individual sponsorship will be matched by Mel and Mels!

My skydive is booked for Fri 19th June at 11am at Hibaldstow.

We have a racenight booked at Messingham Village Hall on 4.7.2015 and we have had lots of people offering to sponsor races and offer prizes.

So as you can see we're keeping busy- i'm pleased to say that Charlie is doing really well with his addition therapy and we are definitely seeing improvements, as are his teachers at Little Imps Preschool.

As a result of the fundraising it does look as though we will be able to go to the specialist CP centre in London we talked about, the Bobath Centre. We see Charlie's paediatrician next week and hope to organise a referral.

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Update posted by CharliesChallenge On Apr 16, 2015

A big thank you to everyone who has donated and another huge cheers to those that have offered themselves up for sponsered events!

So far Charlie has (without naming individuals):

1 Entrant into the Austrian Triathlon

3 North Lincs Half Marathon Runners (including a Pacer!)

1 Manchester 10k Runner

1 London to Paris Cyclist

Mels Totstop Day Nursery, Bottesford did a sponsored Dress Up for Charlie and are doing the Tough Mudder in Leeds

Scunthorpe Tai Chi Chocolate Ladies

Hers & Sirs, Messingham 24hr Haircutathon

We have a Race Night booked and in the process of arranging

Little Imps Olympics

A Skydiver

And honorable mentions to Flower Theatre in Messingham and numerous others that are in the process of arranging sponsorship help for Charlie.

All this help means we may be able to expand our hopes for Charlie's care and take him to a specialist CP care centre in London... watch this space!

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Update posted by CharliesChallenge On Apr 16, 2015

Due to the help that Charlie has been given he has been able to try some different therapies to help him.

One therapy is ABM which is a very child led movement therapy designed to help 'open up the brain to learning'.  To all intent and purpose it helps the brain learn new, easier ways to do everyday things.  As Charlie has a big problem with high muscle tone the therapy tries to show him how to relax intodifferent positions- often without him even knowing!

There is a full review and detailed description on the blog- www.charlies-dad.org

Big thanks to Bill, 1 of only 3 ABM practitioners in the UK for the help.

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Update posted by CharliesChallenge On Mar 11, 2015

As an Audiologist I know and understand the importance of sensory processing in a developing brain, let alone a damaged one.

Today we have purchased a ForBrain audio-vocal feedback device.  Using neuro-plastic (brain-change) principles it can use auditory stimulus to help 'calm' a 'noisy brain'.

The simple idea is that it helps create a feedback loop within the body to help it become aware of itself- possibly promoting changes within the brain.  It is based on the prinicples of an eminent ENT doctor, Tomatis- who himself suffered terrible dyslexia before becoming a highly regarded physician.

Thank you for your help- reviews will be put on www.charlies-dad.org.  This equipment can be very useful in children with sensory processing disorders, dyslexsia, ADHD, autism and those with poor listening skills so we would like to be able to assess its use to publicise to others that may benefit.

Sorry Charlie- patient and guinea-pig!

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Update posted by CharliesChallenge On Mar 06, 2015

In an effort to pay back some of your support I am writing a blog describing our journey and the emotions we've been through along the way.  Although it is a bit of a theraputic 'letting off steam' I have tried to write it in such a way that others in a similar situation may take something from it.

Please, have a read- leave me some comments and pass it to anyone you think might benefit from it.  We don't just want to take your help- we want to help too.

This is my 'pay it forward'...

www.charlies-dad.org

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Update posted by CharliesChallenge On Mar 04, 2015

To all those that have donated...

Please check your junkmail- everyone who donates gets a thank you but we've heard that it might go into your junk folder!

Please don't think we aren't thanking people- we literally stuggle to catch our breath with astonishment each time someone donates. 

We have been able to preliminarily book 2 blocks of additional therapy already. As we do more for Charlie we will detail them on here.

thank you again

L,M and mostly C xx

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Update posted by CharliesChallenge On Mar 02, 2015

Some people have expressed an interest in doing various events in aid of Charlie's Challenge, as such we have put some sponsorship forms together.

If you would like to do a sponsored bike ride, run, skydive (i plan too- eek!) or anything else please email [email protected] and we can send you a form.

On behalf of Charlie, thanks again,

Lou and Mark Smith

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Update posted by CharliesChallenge On Mar 02, 2015

Thank you everyone that have donated to Charlie's Challenge.

As promised the funds would be used to try novel and alternative therapy not available on the NHS.  We can try one already!

The first we can try (and will review on www.charlies-dad.org) will be ABM- Anat Baniel Method.  It is a therapy based on the principle of dynamic neuro-plasticity (brain-change).

We can not being to thank people enough!

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Update posted by CharliesChallenge On Feb 18, 2015

We would love to be able to try every therapy or do every procedure to help Charlie walk but simply most private sessions are prohibitivly expensive. We aim to use any funding to try differing therapies to help Charlie as best we can.

I am planning to launch a blog to detail these but also our previous experiences to try help other parents/families in a similar position. 

We don't just want to take- we want to help; not just Charlie but all those parents who might feel devastated by the loss of their 'perfect' child and to help them realise that children with additional needs are a blessing, not a burden.

Someone once told us, 'special parents for special children' which is touching, but please also remember that although that might appear the case outwardly, no matter how well a parent is coping it is just one more appointment away from a meltdown!

Please join us for the ride...

 

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