When I did my mud run last month, I got in touch with some old friends from school to see if they would sponsor me.  Some very kindly did so.  One went a bit further.  Jonny Lindsay, who shared class 1C with me many years ago, was about to embark on an Ultra Marathon from Dublin to Belfast.  He saw our posts and got in touch to say he’d like to use it to raise money for Thomas.  An incredibly generous offer, and one that left only a week until the race!

Despite that, Jonny has so far raised over £1,200, and has pledged to continue as he is signed up to 3 “normal” marathons in May as well!

Jonny also admitted that the race – 105 miles – was incredibly tough at times, but the thought of the cause he was supporting helped him through those difficult moments.  A lot of credit must go to his presumably rather long-suffering wife Natasha, who followed Jonny through all 30 hours of the race, to provide food, drink, at one point a place to power-nap, and running online commentary of progress.

So a huge thank you to Jonny, and massive congratulations for such a personal achievement for you.

After a much needed break over Easter we came back to Oxford to find out we have a date for the SDR assessment in Bristol…Friday 23rd June. So that gives us 2 months to get him as strong as possible. Should they feel he is ready, the surgery could be as early as August/September…

What does this mean?
After lots of jumble/nearly new sales, mud runs, cake sales etc etc we have reached over half way, we are now at £43,000!

With many events planned for May and June, dare we hope to reach the £60,000 mark by August? If the operation does go ahead then this would mean we have enough to cover that and the first year or year and a half of physio etc.

Thankfully we know of events friends and family are planning to do in September / October for Thomas, so that will help keep the momentum going should we not be able to do things ourselves – and help get us to our target of £75,000. We shall see. One step at a time. It’s amazing to think we have managed to raise this amount in what, 8 months. Amazing!

So, what is coming up:

Jonny Lindsay, Brian’s old school friend, is running a number of marathons, one being an ultra-marathon from Dublin to Belfast.

Greene’s College Students (where I work occasionally), are doing a sponsored 5km run around University Parks on May 6th

Cousins Mark and Catherine have been training hard for their 10k in Bristol on May 7th and have already raised over £1,200!

An ex colleague from Cheney has been doing a sponsored slim for the last 3 months and has raised £469 so far but with a few weeks left may well get to £500.

My cousin Christine, bless her, is organising a second event for Thomas (she and her sister Mandy were the ones who started us off back in August), this time she is doing a fashion show!

A dear friend who I was honoured to volunteer with in Namibia, Sue, is getting married in the Lakes at the end of the month and has asked that friends and family donate to our fund rather than buy them wedding presents! I know, incredible isn’t it. This whole fundraising thing is just, well, so humbling!

As for June… there are cycle rides being planned, sponsored coastal walks, sports days, colour runs and more jumble sales/ tombolas no doubt!

Crazy! Beautiful! Exhausting.

Thank you for staying with us on this journey – it’s a roller coaster for sure.
with love,
nicci and brian and thomas and dylan xx

It has been 4 weeks since Thomas had his Botox treatment and he is responding really well. Naturally it has exposed a degree of muscle weakness but thankfully not as much as we feared. He is back to where he was before the treatment so this is brilliant and shows again, that the surgery would be the best option for Thomas as it would eliminate the spasticity permanently. He doesn’t need it ( some children with CP do) and it is obviously damaging his body.

We are now in our second week of Footsteps and they have been working hard on stretching and strengthening the muscles as well as working on balance, symmetry and co-ordination. The hope is that at least some of the learning done in this time i.e. the improved gait pattern (walking pattern) will be long lasting. We shall see.

So, essentially we have two more weeks before the spasticity starts to kick in again,one more week here at Footsteps and then a block of physio by his NHS physio. Fingers are all crossed that these next two weeks help Thomas with his confidence and his independent walking.

 

 

Yesterday, five friends joined me to do the Monster Race mud run in Cornbury Park north of Oxford.  25 obstacles scattered over 5 km of park, designed to make you climb over stuff, crawl through mud, and jump into freezing cold water!

I admit to being a little nervous beforehand, but it turned out to be great fun.  But it was VERY muddy at times!  Luckily the last obstacle was a water-slide to wash it all off.

At the time of writing, we have raised about £1,500 in sponsorship, and hopefully more will still come in from people who didn’t believe we would actually do it.

All in all, it was a great day out, and a good chance to catch up with some old friends.  Everyone enjoyed it, as you will see from the pictures, and hopefully everyone is proud of themselves for completing the challenge.

We have a dedicated sponsorship page here:

https://www.justgiving.com/fundraising/mudrunforthomas

Heather Louise Doherty, a teaching colleague of mine from Cheney School very generously suggested to her friends and family that instead of buying her a drink for her this Friday they could make a donation towards Thomas’ campaign instead. Her kind gesture helped raise a staggering £260.00!
Mary Foy thank you for ‘Passing it On!’.

Today is the day we hit the headlines!  We have been featured on the front page of today’s Oxford Mail.

The paper came to us a few weeks ago, when one of their writers came across some of our publicity for our fundraising activities.  She got in touch, intrigued by our story and wanted to know more.  So she came round to see us and asked a few questions.

In the meantime, we also had our day at the football (see post below, 19 March), when one of their photographers took pictures of us too.

This all culminated in a lovely story in today’s paper, talking about the journey we are on. What was nice was seeing them also revisiting some other families they have featured in the past, who have been going through similar journeys.  We are clearly not alone in facing these challenges, so it’s nice that we are able to help raise awareness of the condition, and the lack of current NHS support for SDR.

You can read the story here.

 

As we know, Lent is a time to consume less and help others.  The parishioners of Chalgrate Church have been doing just that.  By hosting a Lent Lunch, they have donated the proceeds to our fund, raising £110.47.

A big thank you to Kellie Davey for organising it!

 

Jumble left over from the jumble sale we did a few weeks back has naturally led in to a number of other fundraising events. We managed to get a slot as a seller at the local NCT sale and raised £106.75 and then another £105 at the Table Top sale at Florence Park Community Centre last week so the current total from this event is £1244.07. I say current because we still have an annexe full of great clothes, books, DVDs and toys etc to sell so hopefully more opportunities will come up to raise more money for Thomas’ physiotherapy as we are not quite ready to organise another jumble sale!

Thanks to the love and support of my old school chum Jane Edwards, yesterday we were given the opportunity to go around Oxford Utd during a match with fund-raising buckets. We were also joined by Jane’s family, and by my other dear school friend Mel Bache (and her family too). Ably assisted by my brother Peter, and by Stella and her son James.

It was a great day on two counts. Oxford won 2-1, and we raised just over £1,000! The staff at The U’s couldn’t have been more welcoming, so thank you for getting us another big step closer to our target.

Last week saw Thomas being exceptionally brave when having his first course of Botox injections. Unfortunately, over the weekend, he had an allergic reaction to the first casts but today we managed to get some new ones and they seem a much better fit. The Botox seems to have already taken affect and so they were able to get his foot in a really nice position before setting the casts and so hopefully this will give him a really good stretch over the next 10 days or so. Then it is back to Footsteps to make the most of this ‘window of opportunity’. The injections only last between 6-8 weeks so it is important to focus on those areas which have been weakened by the spasticity in the hope that some muscle memory will build up before it takes a hold again.

I have to say, as hard as all of this is, it gets you closer to where you need to be, to knowing that the surgery offers Thomas the best chance of being able to reach his potential whatever that may be, to be free of this dreadful spasticity that is so damaging to his body.