Here comes Summer!

Well we’re past the half-way point of 2015 and we can’t quite believe where it’s gone! Those of you who follow us on facebook or Twitter will have seen posts about Mae’s recent rehab residential courses, so we thought we’d do an update here to cover what’s been happening.

In March we attended a very special post-SDR party, in honour of all the children who have undergone the pioneering surgery under Dr TS Park. It was a wonderful opportunity to meet up with other families and see how their children are progressing. It was a joy to see Mae walk with Dr Park and, as you can see, he was thrilled to see her.

Mae walks with Dr Park - with a little help from 'Betsy'!

Mae walks with Dr Park – with a little help from ‘Betsy’!

We’re continuing to fundraise with collection tubs in local businesses and occasional events in the community. All of this residual money raised goes to support Mae’s rehabilitation programme.

Children who have SDR surgery have been given the chance to walk because the spasticity (or tightness) in their lower half is alleviated. This is great because it means their hips and legs are free to move and bend. But these limbs have NEVER been used in the way that able-bodied children use their limbs. The muscles have never been exercised, or sometimes even taken the child’s own weight. Mae used to be wheelchair bound, or shuffled on her bottom on the floor, so new moveable legs need some education!

Mae has regular Physiotherapy sessions at home, plus swimming lessons and horse-riding sessions to help strengthen her limbs and work with her Physiotherapy activities.

In addition to this Mae has attended some residential rehabilitation courses. This gives a specialist Physiotherapist the time to work intensively with Mae, focusing on areas which need strengthening, and doing tailored training to help Mae reach her goal of walking independently. The average cost is £3000 per stay. This is footage of Mae’s most recent visit. The work is hard but Mae is a determined Miss and the results are worth the effort, and cost!

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View video of Mae walking

So huge thanks to all who continue to support us. The costs are ongoing and we have future fund-raisers planned. Should you wish to donate to Mae’s rehabilitation costs, you can do so at www.justgiving.com/fundraising/hope4mae-everystepoftheway.

Wishing you a wonderful Summer and we’ll catch up after the school holidays.

The Fox Family xx

A year on!

At the end of January we celebrated the 1st anniversary of Mae’s surgery in the US. Can you believe that its been a year already?

Mae celebrates her 1st SDR Anniversary!

Mae celebrates her 1st SDR Anniversary!

We have kept in contact with the Doncaster Free Press who have been following Mae’s progress. This has been a great way for us to let local supporters know our news. The reporter was very keen to reflect that we are continuing to raise funds for Mae’s rehabilitation, and was kind enough to share details of the ongoing costs and demands of suppporting Mae’s progress. Many thanks to them for highlighting our progress in the Free Press this week. You can see the article, as well as a fabulous video of Mae during therapy, on the Doncaster Free Press website.

We will continue to keep the Hope4Mae fund going, to support Mae’s rehabilitation programme. In celebration of her surgery anniversary, we will be launching a VERY special raffle, very close to our hearts. All proceeds will go to Mae’s rehab care. We will be announcing the details very soon!

Thanks so much for your continued support. It means so very much x

A day in the life…..

You know that saying – ‘Never judge a person until you have walked a mile in their shoes’…? It struck me (Sarah – admin) the other day that not many people get to learn just how much goes into caring for a child who has additional support needs. It’s been a whirlwind of a term since our last post. Just watching from the wings has exhausted me, as Mae and her family juggle their lives! So here I’m going to share just some of the things, big and small, that have been happening since Summer….and they are just the bits that I know about!

The sky dive volunteers undertook another sponsored dive in aid of Mae. The whole family attended to show their support, which involved a 60 mile round trip, on the last Sunday of the school Summer holidays. Yes – the day where you and I, and thousands of other parents, do all the last-minute preparation of school uniform, labelling, washing and ironing :-D The Team did a fantastic job and are still collecting sponsor money in to support Mae’s ongoing rehabilitation costs. Huge thanks go out to all involved xx

Mae’s constantly surprises us with her determination and in early September she gave Mum, Amy, an impromptu rendition of ‘Let it Go’ from Frozen, without realising she was standing throughout. These are the little things that make the effort all worth it!

Mae’s Mum and I regularly collect charity tubs which generous local businesses and companies have offered to house. We cover a wide area of Doncaster and have to account for every penny collected, to comply with the Charities Commission. That’s every penny, in every tub, collected, counted, banked in to Mae’s charity account and recorded in the accounts. Then Mae’s Mum personally thanks every person involved for their contribution, because every penny really does count towards Mae’s rehabilitation. Thanks to all who continue to support Mae’s fund through our charity tubs xx

Mae attended another 3-week session of intensive rehabilitation therapy at Footsteps this term. This involves either a 310 mile / 6 hour round trip per day (on a good day) or staying over in a bed and breakfast with Mae, and being away from the rest of the family. This time Amy chose to do a mixture of both, to break up the stay into manageable chunks and minimise travel hours for Mae. The boys and Dad stayed at home and friends, family and child-minders were enlisted to manage the school runs and clubs around Dad’s work. Even the best opportunities come with added considerations and complications for the family to accommodate.

Mum had to re-apply for a parking permit for the car. You would think that a renewal would be straightforward but, after completing a 10 page form, she still had to confirm Mae’s identity via a third-party, supply Mae’s birth certificate and get it all signed. Nothing is a quick job when you’re dealing with authorities!

Last week Mae had to attend for her check-up to assess her hip rotation and to decide if surgery is required to straighten her hip in its socket. This involved a trip to the nearest specialist unit in Sheffield, a wait for an x-ray and to see the Consultant and managing Mae’s distress that she couldn’t put her shoes back on! These things matter when you are five years old! The great news is that the SDR surgery hadn’t made any negative change to the position of Mae’s hip socket. The Consultant has agreed to review her and x-ray again in another 6 months. Mae’s hip is still a concern but the orthopaedic surgeon has told the family to continue with Mae’s therapy programme just as they are.

 

2014 10 OCT hip assessment

 

Mae continues to attend regular sessions of Physiotherapy, horse-riding and swimming to develop her trunk stability and strengthen her leg muscles. Week in and week out, regardless of the weather, her parents turn out to maintain Mae’s progress.

Other than that, family life goes on as in any other household – Beavers, Scouts, swimming for the boys, parties to attend, meals to make, just with more juggling of appointments, stricter record keeping to account for the charity money and more places to be on time.

Mae was recently lucky enough to be selected for a special trip to Euro Disney and the family have stopped for a well-earned break. We will shortly be updating us on how their trip went – photos to follow!

 

2014 10 OCT disney

Breakfast with Pluto, Disneyland Paris

 

In the meantime, please spare a thought for anyone who has a child with additional support needs. The trials of their day may be more than you can imagine. Many thanks to all of you who continue to support Mae and her family, and who make Mae’s journey possible every step of the way.

 

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