Where have we been? Where are we now?!

It’s been a flurry of activity since Mae’s operation in USA and, whilst Mae took her first steps, our feet haven’t touched the ground! Thanks to everyone who has kept in touch on the facebook page, and apologies to those who only follow us through the website as we have had a gap in posts whilst we get back to a routine.

So, we thought we would have a huge round up of news, progress and things to come, to set the timeline straight! Are you ready….?

Mae’s SDR was a huge success and we are so pleased that we decided to strive for this chance for her. Now we embark on the beginning of a new journey – intensive rehabilitation to make use of Mae’s legs and develop her muscles. You can read more about why after-care is required to develop Mae’s mobility after SDR.

Since Mae has had her operation we have had a few people say ‘You must be so glad you can stop fund-raising now?’, but actually this is not the case! We always knew that we would need to continue to raise some money, as care costs will be an ongoing feature of Mae’s future. Although Mae’s spasticity has been reduced, enabling the use of her muscles, she will need to work hard to develop and then maintain strength in her ‘new legs’. We will therefore continue to fund raise to help towards the cost of equipment and Mae’s rehab programme. Here’s just an idea of some of the ongoing costs involved:

Splints: to support her legs during walking c. £750 per pair. 1 to 2 sets will be needed per year
Paediatric Tripod Canes: to support Mae when standing c. £75 per pair
Forearm crutches: c.£150
Walker: c. £350
Therapy bench: £350
Lycra suit: to provide dynamic compression and develop Mae’s trunk strength and posture c. £850
Physiotherapy sessions: £75 per hour.
Intensive rehab ‘Footsteps’ centre: £2500 per week
Post-op assessment USA, gym equipment, splint socks, knee immobilisers, Physio mats, trike and so on!

So, you can see that our fund-raising is still very much a current need. We have some local companies who are helping us to continue to raise ongoing funds through donations and you can see them on our new Links & Affilates page. If you would like to offer a service or book a sponsored advert please get in touch.

We would like to thank everyone who continues to support our fund-raising and help Mae to achieve her independence. We will update you as new events arise and if you would like to support us with an event or sponsored activity please contact Amy on 07572 878 679 or Sarah on 07587 245 658.

This is what it has all been for….

On the 25th January we landed safely in the city of hopes and dreams – the place where Mae’s dream of walking could become a reality, thanks to SDR, Dr Park and all those who have supported our fund raising efforts!

Monday was our first visit to St Louis Children’s hospital where we got to meet with Dr Park and his team. We are feeling positive, although Mae was worried that Dr Park might wish to X- ray her. She was great throughout her pre-op evaluation, and we’re all set to go ahead. Thanks to the wonders of technology we hope to get ‘face time’ with the boys around lunch time and this will give Mae an extra boost.

Meeting Dr Park

Meeting Dr Park

Mae’s smile seems to be just as infectious here as it is back home, despite feeling jet-lagged and trying to adjust to the time zone difference. Mae had great fun splashing around in the pool on Monday, which made her wiped out earlier than usual. She managed a good night’s sleep whilst Mum tossed and turned – afraid of missing the alarm which would signal preparation for Mae’s op! Mae’s first words on waking were ‘Mum, is Dr Park going to make my legs better today?’

Mae’s op will be on Tuesday at 11am St. Louis time – about 5pm GMT, so about the time you read this post! I can’t believe this day is finally here, and I’m feeling a mixture of emotions.

The local press back home have continued to feature Mae’s story, and help us to publicise the aftercare costs which will be involoved. Thank you to everyone who has helped us get this far!

free press

Doncaster Free Press, p.32, Thurs Jan 23rd 2014

Thank you so much to each and everyone of you that have helped to make this possible for Mae. We truly can’t thank you enough. This operation really does hold the potential to be life changing for Mae. xxx