Our Mission Statement

Since Mae’s successful SDR surgery in 2014 the mission of our fundraising has shifted to ongoing rehabilitation costs. Our aim is to fund Mae’s therapy costs, which maximise function, develop her mobility and will assist her independence as she grows older.

Although we have seen, and shared with you, vast improvement in Mae’s ability to stand and begin to walk as a result of her SDR surgery, the procedure is still not recognised in the UK and, as such, the operation and necessary follow-up is not supported by the NHS. Families throughout the UK, like our own, continue to privately fund the operation, and considerable ongoing therapy costs.

This video helps to explain Mae’s ongoing journey:

The importance of post-SDR Therapy, from MP Fitness

We continue to have weekly individual Physiotherapy sessions for Mae, to focus on her exercises to build strength and stamina in her legs and maintain range of movement. These are not funded by the NHS, so this is something we have to fund privately, at around £4000 per annum. Intensive residential therapy has helped Mae progress in her independence but this costs approximately £10,000 per annum.

Mae attends Riding for the Disabled lessons to improve her trunk control and muscle strength. These are personally funded by the family at £500 pa.

Mae has regular swimming sessions, which is an excellent all-round exercise, to consolidate all of the other therapies. This is also personally funded by the family at £500 pa.

We are always happy to answer any of your fund-raising questions regarding Hope4Mae and open to your suggestions as to how you can continue to assist us in supporting Mae’s therapy. Thanks so much for your support!

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

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

To offer support by way of a sponsored event, fund-raiser or advertising Mae’s cause, please contact us at hope4mae@hotmail.co.uk

Mae’s 2nd Anniversary!

Happy 2nd SDR Anniversary to our brave little ‘Warrior Princess’. We are so, so proud of you Mae!

Thanks to Dr TS Park, SDR surgery, the wonderful team of therapists at Peds Neurosurgery Slch (Michael Kenyon, Jackie Bryce, Deanna, Barrie, Elaine and Miss Beth) Mae’s aMAEzing ‘team’ of therapists (Jo Applin Ward, Adam Viktor Glowacz, Daniel Woods, Mike Poole, Steph Robertson, Charli Louise Yselkla, Amy Bairstowe, Mark Shane Harries and CSW’s Debbie & Dawn) Mae’s hard work, dedication and to YOU.

SDR surgery has given Mae the chance to have a more independent future. Mae still has a long way to go in terms of intensive therapy and achieving her dreams. Still, she has such a positive attitude and shows great enthusiasm when it comes to following her programme (5 days of the week). There is no doubt in our minds that if we continue to support her, then she can and she will get there.

We would like to take this opportunity to say ‘thank you’ to everyone who has and continues to support and share Mae’s journey. As you can see, your help is contributing to a life- changing difference for Mae and we couldn’t do it without your kindness and generosity.

If you would like to help Mae continue with her journey you can donate to her therapy programme at JustGiving, or by texting MAEF70£amount to 70070, thank you xx

2 year cake2 year anniv Mae

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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