THE CHERRY ON THE TOP!

It took no more than a week to dry out after our amazing experience with the Guides paddling on Rudyard Lake in a deluge! The feedback from the soggy Guides has been unanimous – “wicked!” None of us will ever forget Tilly receiving her Blue Star of Merit Medal. Tilly has decided to call her beautiful soft and gentle Centenary Bear, (number two of only one hundred created to mark the occasion), Bailey, in memory of Tilly’s Brown Owl, Janet Bailey. Janet was an absolute Star during Tilly’s Brownie’s journey, (especially on our Brownie Camp) and the Bear will be a permanent reminder of such a special soul.

Preparation for Rudyard Sailability’s pitch at the Leek Show on 31st July has begun in a swishy eaterie in Leek called “Fat Olives”. Anne and I laughed until we cried; lapped up a huge cappuccino and even managed to get a bit of work done. We were only there for about an hour and I felt like I’d been on holiday as it was such a change of scene. I never cease to be amazed at people like Anne who is Rudyard Sailability’s legal representative and has volunteered hundreds of hours of her time to Charity. There have been many such heroes who have donated countless hours of their professional skills in this way when there is obviously no personal gain as such. I am involved in all that I do because of Tilly’s motivational force, but these amazing people do it because they can. I find this very humbling.

It was very obviously the last week of school as we were all bumping into each other and felt like we were running ‘on fumes’. I had the pleasure of joining Tilly on her school trip to Tatton Park Tudor Experience where we wound the clocks back five hundred years and immersed ourselves in the activities of that time delivered by ‘real’ Tudors. It was brilliant to see Tilly tentatively poking her little finger into the gloop of the wattle and daub; sporting a bowman’s bonnet and making some gingerbread ‘Tudor-style’. Tilly was included brilliantly in all of the events and her favourite bit was being the scribe with a feathered quill during a Manor House Court Hearing. Another highlight was the Falconry Display with birds sweeping over the tops of the squealing pupils heads with millimetres to spare.

Just can’t believe that Tilly has completed Year 5 and that Candice will be going back as a Year 8 – the top of the School. It has flown by. They’ve both had a fantastic year and have achieved great things both in and out of the classroom. There is no doubt that Tilly’s inclusion into St Edward’s Junior High has been a resounding success thanks to the hard work and dedication of the entire team. Tilly rounded off the year by being top of her division for Chess after persevering in a match that she looked destined to lose for nearly three hours. Tilly was thrilled to bits and was delighted to be given a trophy on the last day’s Assembly. My lovely Daddie always used to say, “You’ll win if you don’t give in!” Tilly is obviously a chip off the old block!

The air has been filled with anticipation not only for the last day of school, but because “Nana’s on her way!” Just like Aslan in The Chronicles of Narnia we can feel all tingly because Nana is ‘on the move’ and on her way to us.
Nana has come especially to help us at the Jennifer Trust’s annual conference which this year celebrates 25 years of helping all those who live with Spinal Muscular Atrophy. The conference is held in a posh hotel in the Cotswolds and gives us all the opportunity of getting together with our SMA ‘Family’ to eat, drink and be merry whilst we also learn, laugh, cry, play, share and celebrate. The sense of communion is overwhelming as we meet up with old friends from the Clan and welcome along new members. The over-riding feeling is that we are all in this together and have a deep understanding of the unique situation that we are all sharing. We have been going to Conference for eight years and never fail to be inspired and uplifted. I was particularly struck this year by the ‘baby-bugs’ – miniscule powered wheelchairs designed for tiny tots who would normally just be learning to walk. I was also struck by a mature lady living with SMA and a tracheotomy whose partner could ride on the back of her chair on a ‘boogie board’ for short distances instead of using his own wheelchair. The scene was quite sublime to witness and very touching.


We also learnt that clinical trials lasting two years for a drug to improve the symptoms of SMA may be imminent for non-ambulant patients aged between three and twenty-five. Tilly remarked that she would rather remain a wheelchair-user than have to undergo blood-tests every three months! Time will tell. I also learnt that there is a manual transfer sling available for those infrequent transfers when a hoist is not available, e.g. from wheelchair to aircraft seat/sofa/funfair ride, etc, etc. We often have to make this type of manoeuvre and following Tilly’s surgery we often all end up in tears! Daddie is already looking into it as it looks promising.

This year’s Saturday night’s entertainment included a karaoke and fancy dress so the girls dolled up as pop stars. Tilly dressed as a vampish Miley Cyrus and took to the microphone and sang Taylor Swift’s “Love Story” to a packed room! As one might imagine, the whole conference is a bit of an emotional roller coaster anyway, but Tilly’s performance finished Nana and I off.

This year’s Jennifer Trust Conference was extra special for us as advance copies of Tilly’s book; “Tilly Smiles” was introduced. We are delighted with the look of the book that was created by Simon and Jack from the Caudwell Children Design Team, with Tilly having a great deal of input at every stage. This book has been five years in the making and has been funded by the Jennifer Trust for Spinal Muscular Atrophy. Families at the conference seemed thrilled with ‘Tilly Smiles’, scooping up all the available stock and placing orders for further copies. The next stage is to do the big print run and hopefully have copies ready to go out to the wider community at the end of August. The idea is that the Jennifer Trust will give a copy to newly-diagnosed families to ‘shine a light’ into the darkness that shrouds diagnosis. It is also hoped to sell this hard-back book for £10.00, with all profits going directly back to the Jennifer Trust. Bruce Forsythe has written a beautiful forward which hopefully will hopefully set this book into flight.

The Jennifer Trust is an amazing charity started twenty five years ago by a Mum, Anita, who found that there was no support available for her family when she discovered that her daughter Jennifer had Spinal Muscular Atrophy. Sadly Jennifer died aged eight months and Anita tragically died following a brain tumour four years ago. The legacy that has been left behind is awesome. The Charity's aim is to provide help for today and hope for tomorrow, and with family support and funding for research that is exactly what is delivered. The Charity is able to reach out to the many different groups needing quite different support at different times - a bit like offering individual slices of from a cake. The Conference is the cherry on the top!

A Comendation for Tilly

It has been a remarkable time. We met with Tilly's new Physio - Margaret - and it was with great joy that I saw Tilly standing again in her marvellous wheelchair after a break of about ten weeks following surgery. There is no sight like it, and I can only imagine how it must feel for Tilly. Naturally, life is a compromise, and if Tilly is to stand up every morning before school, then she must forgo the luxury of feeding herself, as the arm supports do not function so well in the standing mode, and Tilly is unable to swallow so effectively either. Life is a balance, and in my opinion standing for Tilly is, has and always shall be, paramount.

There has been feverish activity this last week with the final touches being added to "Tilly Smiles". We were honoured with a visit from Hilary and Doug from the Jennifer Trust for Spinal Muscular Atrophy to the offices of the Caudwell Children where Simon from the Design Team worked with us to get Tilly's book ready for the Conference next week. Tilly has worked alongside us all the way and we are tingling at the prospect of actually seeing the "real thing". We should have some copies to take the the annual JTSMA Conference to gauge interest and think about how many more to print. Every penny made will go to the Jennifer Trust, so we really hope that it will be well received. Time will tell.

We had an extraordinary Guides' Meeting this week as it was held at Rudyard Lake so that the Guides could participate in paddling Bell Boats with Rudyard Sailability. Little did Tilly know that it was also the perfect opportunity for her to be presented with a prestigious national Girlguiding medal - The Blue Star of Merit. The evening sun shone as Tilly was stunned to be awarded such an honour - in her words, "a real medal - like I was in the army". Tilly was chosen for this tribute because Tilly has shown that she can overcome her medical challenges and is always smiling and never moans! Also the Girlguiding Association acknowledges Tilly's role as Ambassador for the Caudwell Children. Tilly is now also the proud owner of Bear No. 2 of only 100 Centenary Girlguiding Bears in the world. Tilly has decided to call her Bear "Bailey" in memory of her Snowy Owl who made Tilly's Brownie Adventure so special.


However, we had much more to experience that special night as we took to the water and found ourselves caught in the middle of what can only be described as a tropical thunder and lightening storm. We were absolutely drenched! The Brownies and Guides sang their hearts out! It was night we shall never forget!

I did my "Talk" the next morning for the new recruits to the HomeStart programme. It is always a pleasure to deliver this session as I was lucky enough to have been blessed with Linda, a HomeStart Volunteer, who transformed our journey through this parallel universe beyond belief. It is quite difficult to imagine how two hours a week can literally transform a families experience - but I believe that we are living proof that it can happen.

Tilly's chair posed a challenge for us this week as the standing function had resulted in the leg rest being frozen in the raised position. Resolving this problem is a challenge as Tilly is wholly reliant upon her chair and is unable just to leave it with the engineers to fix. Tilly's back-up electric chair is unserviceable so consequently, Tilly drove around with her leg out in front whilst a new part was sent for. Unfortunately, Tilly managed to sustain a foot injury whilst she played with her friend after school. An x-ray shows that no bone is broken (Thank God) and we are treating Tilly for a severe sprain! Rolf took the chair to be fixed the next day and fortunately the part was in the shop and Tilly is now back up and rolling - but not standing yet as we need the swelling to go down! Hey! Hoh!

It was great to see Tilly back in the pool again as I'm convinced it is the best exercise she can get. The only snag is that I have to lift Tilly from her chair to the shower-chair and then on to the pool hoist. Tilly cried as I obviously hurt her during the transfer. I am exploring the possibilities of taking Tilly to swim in the special schools locally as the municipal pool really cannot cater for Tilly's needs.

Candice went off for a magical day with the Treetops Siblings Group to Blackpool. I am so pleased that Treetops dedicate such quality time to such a special group of young people who also live with disability, even if it is 'once removed'.

Tilly and I went to "Primarni" and Tilly came home clutching yet another pair, (two pairs, actually) of shoes. It breaks my heart that Tilly's heart's desire is footwear as she spends most of her life in splints and her feet are doing their level best to turn right over. However, we can still manage to wriggle Tilly's little feet into the latest creations at a price we can afford so that's great for the time being.

Tilly had her second piano lesson using her arm supports and loved every note. It must be a great feeling for Tilly to actually hear the fruits of her labours after years of practising. Fleur, Tilly's teacher, is looking into an accessible examination centre!

As a purely 'comb and tissue paper' musician, I feel another gong coming on!

It has been a real ‘dog on lino’ sort of week with multi-meetings, Sailability activities, a sleepover and a variety of media interest.
Tilly had her bestest friend, who has been with her since pre-school, over for a sleepover which was great. We cleared out all the junk that was lurking beneath Tilly’s bed and lowered it so that she would be on the same level as her friend so that they could natter late into the night. I think it is important to make sure that Tilly has plenty of time to nurture her friendships as she has had so much time off school recently with her various operations; it is inevitable that relationships will cool and will need reviving. Talking to other parents, it seems that friendships and parties and sleepovers can become a real heartache as children with disabilities struggle to join in. Tilly has been blessed by her friend.
Later in the week we had a visit from BBC Radio Stoke who was reporting on Racketys – the company that creates adaptive clothing for those who live with disability. During the interview I spoke of the barren ‘clothing landscape’, pre-Racketys, awash with tartan blankets and enormous waterproof capes (any colour so long as it’s blue) with absolutely nothing designed for scrumptious, trendy wheelchair users of any age. I remarked that it would be easier to kit out a pet dog in desirable adapted clothing with shops and websites aimed at this market, yet there was nothing for Tilly until Annabel and Racketys came along.
This item was picked up by BBC Midlands Today and we were thrilled to welcome the very delightful Laura McMullan to do a piece for the local news – the only challenge was that she arrived at 0700! We set our alarms a little earlier than the usual 0530 and, with the help of Candice and Tilly’s amazing arm supports, managed to have Tilly all ready for school at 0815 having done her bit for Racketys. Just glad that on this occasion I had remembered to remove the sponge roller from my fringe, which, amongst all the excitement, I very nearly sported when we went to meet Peter Andre!
That was another media highlight this week when Tilly was greeted at school with hoards of pupils and staff having seen her Peter Andre’s reality TV programme whilst he attended the Caudwell Children’s Butterfly Ball. This can be viewed for the next few weeks at: http://www.itv.com/itvplayer/video/?Filter=156756
It was a great boost for the Charity and Peter Andre came across as genuine and caring and determined to do all that he could to support the children. There is no doubt in my mind that he really is, just as he seems, a ‘lovely bloke’ with a heart of gold. The great joy is that Rolf has added Peter to his brilliant repertoire of impressions so we we’re never more than a heartbeat away from Mr Andre, or Mr Ramsey, Mr White, Lord Sugar, Mr Tarrant, etc, etc. It all adds to the fun and goes some way to keeping us laughing!
I did my “Talk” for the Caudwell Children Team and this time it was filmed so that it could be used for training purposes. With the use of a variety of props including a skipping rope, blindfold, ear-muffs, etc I tried to show just how a family can feel when they learn their child has a disability and just how much the Caudwell Children can help. It’s quite emotional to delve back into those dark days, but we are very lucky as the outcomes for Tilly have been extremely positive and joyous. I hope it helps.
The cameras kept rolling last weeks as Tilly was then filmed by Neater Solutions, the company that produce Tilly’s amazing arm supports. They came to school and captured Tilly playing Chess; cooking and then the ‘piece de resistance’ – Tilly practising for her next Ballet exam. Tilly operates the control with her foot and that leaves both arms free to explore the full range of arm movements (port de bras). Tilly looked beautiful and quite took the cameraman’s breath away as he’d never imagined the arm supports being used in such a creative way. I can’t wait to see the footage.

What the cameras didn’t capture, however, was the smiles on the faces of Tilly and her piano teacher, Fleur after Tilly had her first ‘arm-support’ piano lesson. I was sat outside in the van writing this Blog and had no idea how successful it had been. “It has been a million times better,” was Fleur’s quote, and Tilly said that after practising for years, “the music sounded like it ought to!”. Tilly is now practising for her first piano exam! I can’t tell you how delighted we all are – quite remarkable for a little girl who is not able to lift her own hands above her waist.

The photo shows Tilly playing the piano without her arm supports - I'll have to get some footage of her with them so that'll 'hearing' and seeing will be believing!

Life-Changing

It was great to see Direct Payments in action on Saturday at Rudyard Sailability’s Annual Dragon Boat Race where sixteen teams of eleven paddle it out for victory and for the Charity. It was a really busy event and from 0800 - 1600, Laura, Tilly’s support worker, made sure that Tilly played her part in the fundraising events and also that all her personal needs were met, whilst I was running about doing my bit. The sense of independence that Tilly has from her fifteen hours a week support from Social Services is life-changing and I can’t imagine now being able to cope without them.

The only slight problem from being at the Lake all day on such a glorious day was the dreaded sunburn which left Tilly feeling rather sore in places, in spite of applying sun cream and seeking out the shade. Tilly is a ‘sitting target’ for the damaging rays, but is also keen to wear her shorts and strappy tops instead of covering up. I am just waiting for someone to invent a sunshade/umbrella for wheelchair users that will easily clip on and off, and won’t make the user look like they are sitting in a plastic green house. I am sure that this device would be quite simple to create and would make the designer a fortune. I might just have a go myself as I’m sure it would make such a difference!

The hay fever continued to be nuisance to Tilly so Daddie bought a light therapy device which cost about £10 and consists of two prongs being inserted into Tilly’s nostrils for three minutes at a time, twice a day. We continued with the antihistamine alongside this rather quirky therapy, and, so far so good, as the symptoms seem to have reduced, even now that Tilly has stopped taking the tablets. We live in hope.

We three girls made it to Church on Sunday and Tilly was welcomed back with open arms from all her ‘aunties and uncles’ that’d missed her whilst she’d been away recuperating from her various medical issues. They are such a blessing. It’s a great time for me to stop and think in Church, but I rarely get away without blubbing at something or other. This week I experienced an excruciating pain as I felt the acute loss of my lovely Daddie, even though he died over twelve years ago. I learnt so much from him and often wonder just what he’d make of my life today – I bet he’d have rigged up a parasol for Tilly by now!

Beautiful Candice had her ballet exam on Sunday and I was so proud to take her up to the studio. I’d had the privilege of seeing her dress rehearsal so I knew just how exquisitely she dances. Rolf stayed home and put the flags out to watch the England game with Tilly. In spite of the obvious disappointment, and having to do an evening meal for one of our B&B guests, Rolf created a wonderful turkey roast which we enjoyed ‘like a proper family for once.’

Tilly’s week has been filled with trips to the hospital for assessments of her chest, legs and spine and I’m pleased to report that she passed them all with flying colours. Tilly no longer needs to take a daily preventative anti-biotic; no longer needs to wear a cast on her left leg; and all her wounds are healed and she can get back to swimming (which she has missed terribly).

We had a terrific session to work on ‘Tilly Smiles’ with Caudwell Children’s Design Team and Liz from the Jennifer Trust for Spinal Muscular Atrophy. Tilly was so absorbed with the detail and we all just can’t wait to see it in print.
Tilly continues to teach her PA, Laura, how to sail and I think Tilly was very relieved to have company in the boat this week as the wind was gusting from all directions making for a thrilling experience better shared with a friend! The squeals were on the border of delight and terror, but I felt glad that a little girl such as Tilly has the opportunity to experience these emotions for real thanks to Rudyard Sailability and Direct Payments.



There was a red letter day this week when the Balder Engineer fixed Tilly’s chair that has been on a ‘go-slow’ for weeks. Tilly is once again back in the fast lane and loving it. However, it was a real eye-opener for us all for Tilly to spend a day being pushed in her back-up electric chair that had to be used as a manual chair because the battery was flat. We really didn’t need a reminder to let us appreciate how brilliant Tilly’s current chair is and how at £20K it is worth every penny, but as we struggled to transfer Tilly; to dress Tilly; to access education; to manage to feed Tilly without her arm support; etc it became more and more obvious how great a part a great powerchair can play.

As I got Tilly ready for school in the manual chair Tilly asked me how she looked and I said she looked very smart – which she did. Tilly replied, “I feel like I am disabled in this chair, and I never feel like I’ve got a disability in my powerchair.”

Hard to imagine how life-changing a piece of equipment can be.