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 [email protected]

Mae’s first day

29th January 2014

After a long day yesterday, Mae woke at 5am (11am GMT) in a panic, wanting to know where her wheelchair was and why she had to have a drip in her arm. Understandably these are hard questions for her family to explain the answers to, and it has been difficult to hear that Mae has been unsettled. Mum says: ‘All of the answers are days away and so it seems quite hard to find the right thing to say. I’ve been trying to reassure Mae that it shouldn’t be too long as I don’t want to cause her any further upset. The more upset she gets, she cries and then says “Mum, my back hurts” For a split second I wished I could give her the world back that she feels comforted in and is so used to….’

After a few more hours sleep (10:45 St Louis, 16:45 GMT) Mum updates us: ‘Mae had a catheter leak and so we have had a few more tears with a bed sheet change and rolling her. Mae asked for some Weetabix, which is great progress, and the first thing she has eaten since her pre op fasting. Good job we bought some with us as they don’t have it here in the US. The nurses have been fascinated by it. Mae managed two Weetabix which I am really happy about. Last night there were concerns about Mae’s fluid levels. In recovery she had a drip and then she was having small sips of apple juice. Through the night her catheter levels were low. Thankfully they are now on the up. Mae is now sleeping peacefully and the nurses are happy with her progress!’

When Mae wakes she will be greeted with this huge bunch of balloons for her bravery, sent by her Auntie and Uncle!

Balloons for brave Mae

Balloons for brave Mae

Post-op update, day 1

Good morning everyone! As we start our day in the UK, Mae is enjoying her first night of sleep post-op in St Louis. So far she spoke to Mum at midnight (GMT) and asked when she could get in her wheelchair! Then Mum met the ‘touch-dog’, Pepper at 2am (GMT), whilst Mae was sleeping, before everyone retired at 7am (GMT). Here’s a message from Mum at 7am (1am in St Louis):

‘Feeling tired. Today has been an 18 hr day. Time to get some sleep before the doctors do their rounds at 6am. Mae has been sleeping for the last few hours. She has been turned and seems to be coping well.’

So, we’ll know more at about 12 noon GMT, when the Drs do their rounds. Well done Mae and we’ll keep you posted here and on the Hope4mae page. Thanks xx

Mae, sleeping peacefully following her SDR surgery

Mae, sleeping peacefully following her SDR surgery