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

An exciting event! Care to join us for a challenge?

Team Hope4Mae – Colour Obstacle Rush – 5K – 2016

 SHEFFIELD, 25 June

Dear friends, family, supporters and visitors to the site,

We would like to invite you to get involved in the ‘Colour Obstacle Rush – 5K’ it’s going to be great fun and all for a great cause.

colour pic

 

As most of you are aware little Mae had Selective Dorsal Rhizotomy Surgery in the USA, 2 years ago. Since her return, it has been essential that Mae follows a strict, intensive post-op therapy programme to ensure optimum results from her surgery and the best overall outcome possible. Weekly, Mae has 3 x Swimming lessons, 1 x horse riding (at local Riding for the Disabled Association), 2 hrs following her strength and conditioning (set by her coach in Scotland and is reviewed at each intensive therapy block) and 1 hrs private physiotherapy (as Mae is no able to get the required level of therapy on the NHS) at a cost of £60.00 per hour. Mae also attends intensive therapy courses at ‘Walk This Way’ UK, and the ‘Footsteps’ centre, for approx 10 wks of the year. Altogether Mae’s therapy costs total approx £15,000 per year.

We have decided to get a Hope4Mae team together for ‘Colour Obstacle Rush – 5K’. All sponsor money raised for this event will go into Mae’s post op therapy fund. Sponsor forms will be provided to you, by us. Please let us know if you would like to be part of the team! The quicker we can get the forms out, the more time we have to get sponsors.

The registration fees for this event are as follows……

prices large

 

As you can see from the pricing page above, the sooner we sign up the cheaper our tickets will be! 10% discount is given automatically if we can register 4 or more people at once. We will be booking our initial confirmed team of 6 before the 3rd February, to benefit from the early bird price.

If you are certain that you are taking part in the event and would like to be added to this group, and guarantee your group start time, then please let me know in the next 24 hours and we can contact you for necessary personal info and to discuss payment of the registration fee. Early bird and group discount mean this should cost approx £32 to book by 3rd Feb. Prices increases in 3 stages after that. On the website is information about joining the team at a later date.

We appreciate the registration fees can be an issue for people. For this reason we think that it would be fair to allow people to take their ‘registration fee’ out of their funds raised for this event.

By registering at separate times, this will mean that we could all be in separate start groups and therefore won’t be together to get each other to the finish line! Either way is fine as we can all meet up at the end of the event. I’m sure that Mae will be attending and hoping to see her team of colourful, supporters/ participants/ parents, cross the finish line!

WANT TO JOIN US? Contact Amy (Mae’s Mum) on 07572 878 679, or Sarah (admin) on 07587 245 658. *Registration fees will increase after 3rd February*

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