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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29th August, the end of the Summer Break – A message from Mae’s Mum

Hey there and happy Friday to all of our Hope4Mae friends and followers.

Slowly but surely we’re getting back on track! It’s been a sad and busy few weeks for the Foxes.

Sadly we had to say ‘Goodbye’ to our much loved Auntie Pauline. Some of you will be aware of how much of a great driving force she was for ‘Hope4Mae’. Auntie Pauline inspired Spaldwick on sea to raise money for Mae, She crafted many patchwork Eco bags to raise funds for Mae and spreading awareness of Mae’s cause, helping Mae to achieve her dream really meant so very much to her. Although fighting a terminal illness Auntie Pauline would always keep up to date with Hope4Mae (Checking her pages daily) and would offer her help and support xxxx

We would like to take this opportunity to thank staff and customers at The George, Spaldwick, who have supported and given so generously to Mae’s cause.

Auntie Pauline has made a beautiful patchwork quilt which is to be raffled for Hope4Mae. Tickets will be available in the new year. Please look out for details. Not to be missed!

quilt 3

Last week we went to France with family for a holiday. It was a much needed and welcomed break. We had great fun splashing around in the pool and it was good therapy for Mae. One of the days we visited the seaside and it was so nice to see Mae having so much fun. She could be heard singing “we’re having so much fun in the sea”. She was quite literally lunging herself into the waves on her knees. We heard her saying “And it doesn’t hurt”!

Since we arrived home at the weekend Mae has been straight back to it with swimming, physiotherapy and hospital appointments. We are due at the hospital in less than an hour to get Mae fitted out for a pelvic binder. Fingers crossed it’s been worth the wait.

Thank you for your patience and continued support it really means a lot to us xx

29th August 2014 - Mae is fitted for her pelvic binder

29th August 2014 – Mae is fitted for her pelvic binder

Behind the scenes…….

We are sometimes asked when the website will next be updated. It’s great that people want to follow Mae’s story, so we thought we’d share a bit of behind-the-scenes life, so you know why we sometimes go a bit quiet!

This website is a digest of what has been achieved and a place to find all of our events and links. We tend to post major news on here, and group a number of news items at once. You will find our regular daily updates on our facebook page, where myself (Sarah – admin) and Mae’s Mum, Amy, post news as it happens.

In a typical week we upload 15 to 20 posts and photos to facebook, and respond to emails, phone calls and messages. Sarah deals with around 20 spam comments on the website every week – from where to buy cheap cigarettes to people sharing sites of a ‘less tasteful’ nature! We oversee and advertise the easy fundraising site, where supporters can help us raise money through their normal online purchases. We distribute and collect charity tubs across Doncaster, and Mae and her Mum attend every possible charitable event which is run in Mae’s name. This is in addition to normal routines, which are anything but ‘normal’!

Mae’s current ‘normal’ routine involves a school attendance of 49 hours per week, as every child has. On top of this Mae has 7 to 8 hours of Physiotherapy activity per week, including 3 swimming sessions, horse-riding, Physiotherapy at school and Private home-based Physiotherapy. Mae has two brothers, so their routine also has to be accommodated, so it’s a flurry of Beavers, Cubs, swimming, homework and ALL the standard meals, laundry, cleaning, family visits and friends’ parties that most families will be familair with!

In addition to that little lot, the fund-raising hasn’t ended! We were amazed to have achieved Mae’s target to get her to the US for her operation in January 2014, and the generosity of locals and supporters farther afield was astounding. We always knew that there would beĀ  more to do after Mae’s operation, as her success in achieving her dreams of walking depend on assistive equipment and consistent physiotherapy, to develop her strength and muscle bulk in her legs and trunk. This equipment will be renewed as Mae grows and Physiotherapy will be ongoing as Mae develops. This all costs money, and lots of it!! Mae has two further intensive sessions booked at Footsteps which, in addition to the cost of treatment, incurs 30 journeys of 156 miles in travel costs. We have far to go with the fund-raising….

So we are thankful for continued support from those who understand it’s not over. We have many helpful people who continue to house a charity tub for Mae and every penny really does count. We have local companies who get in touch, often out of the blue, and ask if they can arrange a dress-down day, or a bake sale, or run an event in Mae’s name. We are so grateful for all the help and offers of support.

It’s an ongoing process, and we appreciate that everyone wants to be a part of it. So we continue to try our best to bring you our news. If we go quiet for a bit, rest assured we are creating the next lot of news to share with you! :-) Thanks for following our progress x