Daddy will be running through mud to raise money for my ABR therapy! Please support him.

Disney? Dolphins? Done that

June 17th, 2014 § 0 comments § permalink

It is hard to believe, as we spent so long planning and talking about it, but our amazing trip to see the dolphins in Florida is done and dusted. I can safely say that it was the best three and a half weeks of my life. Big furry characters, 700lb mammals, 30+ degree heat, the occasional cockroach; what’s not to love?

The organisation of this trip was mind boggling. There were, in total, eleven people joining in for some or all of the trip, including Gr-Auntie Wendy and Gr-Uncle Steve, my godparents, and Daddy’s friends Nenad and Stephanie. Me, Gabbie, Mummy, Nanny, Grandad and Auntie Chloe started our adventure on Thursday 8th May. Daddy, that sly old fox, had somehow managed to wangle five days in Bulgaria on his own. I am feeling that Mummy will make sure he remembers  that for the next decade or so… We flew with British Airways and although we had been distinctly underwhelmed by their customer service and ability to provide for their less able bodied passengers before we flew, the cabin crew were lovely and very friendly. I took my tomato chair (I would just like to interject that mine is not that slightly suspicious brown colour, but rather a pleasant turquoise) which fit neatly in the airline seat and allowed me to sit there without falling out of the side. Gabbie and I were extremely well behaved on the flight, with all adults present silently thanking the god of electronics for the invention of iPads. We landed in Orlando at about 6pm local time and made our way, with our veritable mountain of luggage, through the airport. There was a slightly hairy moment when the passport control officer advised Mummy that as we were travelling without Daddy, we should have a notarised letter of his consent that she take us out of the country without him. I am not sure exactly what made him decide not to pursue this – perhaps he was by nature a very nice man, or perhaps he looked at Mummy trying to push my wheelchair with Gabbie clinging round her neck while simultaneously lugging along several bags and decided that it was unlikely that Mummy was fleeing with us for good.

After successfully leaving the airport, with the only casualty of the very long trip being the travel potty which had been left on the plane. along with Grandad’s jumper, which he had never liked anyway, we collected our insanely large wheelchair adapted vehicle from outside. We had hired it through Wheelchair Vans of America and were delighted with it. It transported us speedily to our villa in Lake Berkley, which was a modest four bedroom, three bathroom affair with private screened pool; nothing less than I am accustomed to of course.

We then spent two weeks in Orlando, with Daddy joining us on Wednesday 14th May. Our schedule was nothing less than terrifying, with two days at Magic Kingdom, one at Animal Kingdom and one at Hollywood Studios; a character breakfast; a visit to Green Meadows Petting Zoo, a day outlet shopping, a morning at Downtown Disney, a day at Seaworld (a visit much regretted by the parents after they watched the film Blackfish on our return home); a trip to Universal Studios for Mummy, Nanny and Auntie Chloe; a couple of days sunning ourselves by the pool; and an evening at Medieval Times dinner show. I was ecstatically happy. I had all of my favourite people in the world around me while I was out and about, busy doing lots of fun things. I loved the characters, particularly the Mouse himself but even the princesses as they made a huge amount of fuss of me, and gave me lots of lipsticky kisses. I thoroughly enjoyed the rides and ate large quantities of ice cream.

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My gang

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All smiles with Mickey and Minnie

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Kisses!

Disney is immensely disability friendly, with step free access throughout their parks. A large number of the rides are wheelchair adapted, meaning that I could enjoy them from the comfort of my own seating. The American people were also very accommodating, and seem to have less of that British awarkwardness that make people in the UK panic inwardly at the thought of talking to someone with a disability in case they inadvertently say the wrong thing. They would approach me with comments about how much they liked my glasses, or what a lovely smile I have. And I loved the attention!

After this fun packed fortnight, Mummy and Daddy and Gabbie and I headed south. We stopped for two nights in Miami and spent a lovely day at the beach, then continued on to Key Largo to start my dolphin programme. This leg of the trip started badly with a roach infested apartment (aggh!) but we moved to a beautiful town house with a huge communal pool with beach areas.

I had chosen to do my therapy at Island Dolphin Care, which is a lovely organisation offering dolphin assisted therapy to people with special needs. I had a wonderful therapist called Gretchen and two lovely interns called Tori and Coralie working with me. We would start each session with classroom time, and I decorated a wooden turtle, a bag and a t-shirt (with a very fetching lobster pattern comprised of my hand and footprints). Following this, I would get into the lagoon with Gretchen and my very own dolphin, Sarah. Sarah’s trainer Wendy would instruct Sarah to complete different behaviours, such as pulling me around in a circle or giving me a kiss.

 

I had mixed feelings about all of this. I loved the dolphins and I really enjoyed the first session, but after that I started getting upset in the water. Well, I didn’t want everyone to start sitting on their laurels and assuming I was just going to get on with everything quietly! I enjoyed the session on Friday – I got into the water with Daddy and we did a ‘natural swim’, where there were no trainers instructing the dolphins and we just got to swim as part of their pod. My dolphin, Sarah, came over to check on me which was quite amazing.

It was then time, with some tears, to say goodbye to the folk and Island Dolphin and also to Florida as we flew home the next day, 31st May, landing at London Heathrow on the morning of 1st June. Gabbie and I slept the entire flight home, waking around 15 minutes before we landed, while Mummy and Daddy slept not at all.

And so there it is. Disney and dolphins. What a lucky boy I am to have done that at my tender age. Huge thanks go out to all those people whose kind donations made this trip possible. I want you to know that you helped make me very happy.

 

Gentlemen, fold your parachutes!

April 6th, 2014 § 0 comments § permalink

This morning, Daddy left the house at the rather ungodly hour of six o’clock and headed into the wilderness (Northamptonshire – Mummy really considers anywhere outside of the M25 to be remote) to throw himself out of a plane in the name of fundraising. There has been much emotion surrounding this decision. Mummy has been beside herself with worry – although she and Daddy do not always see eye to eye she is a big enough person to admit that she would not make a successful single parent. Grandad can hardly even look at Daddy, saying only ‘I do not approve of this Martin.’ Daddy, somewhat perversely some might say, has been looking forward to it. Everybody wanted it to be done and finished.

Anyway, as many people who have ever tried to have a summer holiday in Cornwall will already know, it seems that human desire holds little sway over the weather and after a two hour drive Daddy arrived at the drop zone to find that strong winds and heavy rain meant it was not safe to go ahead with the jump. Before anyone claims that this is merely an excuse to get out of the arguably insane act of launching oneself out of an aircraft at 13,000 feet, the skydive has been rebooked for Bank Holiday Monday at 1pm.

And so we suffer another two weeks of nervous excitement. Or in the case of Mummy and Grandad, pure terror. Ho hum.

Please support Daddy’s skydive!

March 25th, 2014 § 0 comments § permalink

Call him mad if you will (and we usually do) but Daddy will be doing a skydive on 6th April to raise money for my next ABR (Advanced Biomechanical Rehabilitationconsultation. He and a friend will be throwing themselves out of a plane and are asking for your support (both financial and finger crossing!)

You can donate at http://donations.supportsasha.com/fundraising/jump

Or you can go directly to his just giving page: https://www.justgiving.com/supportsasha/

If you are a UK taxpayer please add gift aid to the donation. Thank you to everyone for your continuing support.

My friend Jacob

February 9th, 2014 § 0 comments § permalink

imageContinuing my recent trend of life events, this week I had my friend round for a playdate. This was exciting for two reasons. Firstly, Jacob is the first friend that I have chosen myself. Up until now, we have only had people round because my Mummy likes their mummies! But Jacob and I are in the same class at preschool. When I get to school in the morning, he comes straight over to say hello and I give him a huge smile. He helps me all day and plays hide and seek with me when we go to soft play. The second momentous element to this was that Jacob is the first person we have had to play without an accompanying adult. I won’t lie – this caused some anxiety for poor Mummy, who felt that Jacob may like the idea of a playdate in theory but like it less when he was left alone at our house.

She needn’t have worried. When he arrived at our house, after a morning of excited anticipation on both of our parts, he literally pushed his auntie out of the door. We made cakes together (Postman Pat ones), played with our Woody toys, and played our favourite game of hide and seek. Then we ate the cakes. A good time was had by all – although poor Mummy looked rather exhausted by the end of the morning, having spent some time running around carrying me to hide and to find Jacob.

I hope Jacob wants to come and play again.

Long time no write

February 2nd, 2014 § 0 comments § permalink

I am horrified that it has been over four months since my last blog post. It is true what they say – if you want something done, do it yourself. Unfortunately for a man with my fine motor skills it is necessary to delegate some tasks, such as typing, to others. Shame on you Mummy.

Anyhoo, on to more exciting developments. Today I went to the cinema for the first time! In preparation for our upcoming trip to Florida in 13 weeks and four days (what? No, I’m not counting) my parents have decided to equip us with a knowledge of all things Disney, both retro and present day (can you believe The Little Mermaid came out in 1989?!) This has thus far consisted of us watching Disney films at home and Gabbie endlessly reading a collection of books about Disney princesses – yawn – but today, emboldened by the fact that we made it through the pantomime at Christmas, we embarked on a family trip to see Frozen at the Odeon in Beckenham. I must admit to sneering at this idea before we went; after all, how good could a screen production not featuring Justin Fletcher be?

It could have been a disaster. It must be admitted I do not have the best track history with noisy experiences, and I have been known to make myself vomit in protest if Gabbie is allowed to watch Postman Pat while I want to watch Mr Tumble – ie, all the time. To top it all off, as we were walking down the ramp into Screen 5 (wheelchair accessible), Mummy realised that she had forgotten to bring my ear defenders. Just another example of her lackadaisical attitude. But it was all good! I loved it! I found the snowman, Olef, particularly amusing as he did a lot of falling over and I am a great fan of a good bit of slapstick. I had a little nap halfway through and then consumed my entire bag of Milkybar buttons, miraculously not hindered at all by the problems which so prevented me eating any kind of reasonable food that I am now fed via tube.

I felt a rite of passage had been achieved and ate a bowl of Nandos chocolate frozen yoghurt in celebration.

Go Gabriella go!

September 29th, 2013 § 0 comments § permalink

Today my Gabriella ran the Ealing half marathon, donating her sponsorship to Support Sasha. I call her ‘mine’ as that is exactly how I think of her! She did amazingly well, crossing the finish line in about 2 hours and 15 minutes, and making it all look extremely easy. I took Mummy and Daddy and Gabbie along to watch and we met up with Gabriella’s mummy, Helena. I am ashamed to say that despite standing at the finish line for over an hour, we somehow managed to miss the exact moment at which Gabriella crossed it. Helena feels strongly that this was because Gabriella was moving at such speed that she was merely a blur, and she is probably right.

Nevertheless, cross it she did and in a much better time than she was expecting. Her efforts have raised over £600 for Support Sasha and we think she is even more wonderful now than we did before. If you have not had a chance to sponsor Gabriella, there is still time – see her page at http://donations.supportsasha.com/Fundraising/Gabriella.

We love you Gabriella!

Gabriella and Sasha

Drama, drama, drama

June 10th, 2013 § 0 comments § permalink

Last week we received some rather unpleasant news.

In January, a routine x-ray revealed that my hips were beginning to dislocate – that is, the balls of my hip joints were moving out of the sockets. This is a very common problem associated with cerebral palsy and around 90% of people who are wheelchair dependent will need some kind of surgery to correct it- either soft tissue, involving cutting and stretching the muscles and ligaments, or orthopaedic (bone) surgery, a major operation involving lots of pain and a long recovery period. The x-ray showed that my left hip was around 30% subluxed (that means how much of the bone has moved out of the socket) while my right hip was 40%. My amazing SuperDoc, Charlie Fairhurst, explained that anything over 30% is cause for concern. He injected some Botox to help relax the muscles around my hips and stop them pulling the joint. My parents, in a display of optimism very common to Daddy but almost unheard of in Mummy, were hopeful that we would get away with soft tissue surgery and improved postural care. They consulted Sarah Clayton, from Postural Care Skills for advice.

On Wednesday, Mummy and I went up to the Evelina Children’s Hospital to meet one of the orthopaedic surgeons there, Mr Norman-Taylor. Dr Fairhurst had referred me to Mr N-T to ‘aggressively monitor’ my hip situation. We went for an x-ray (I was incredibly brave and got a teddy bear sticker which Gabbie tried to eat that evening) and then met with the surgeon and a physiotherapist to discuss the results.

All was not well. My hips had dislocated a further 10% on both sides since January, a rather alarming rate of movement. The surgeons informed us that there is really nothing to do in this situation but go in for the bone surgery, as they know that my hips will certainly dislocate and cause me a great deal of pain.

Not really what we wanted to hear. The only ray of light is that I will be having the less major of two major operations (Hooray! I hear you cry). Not to go into too much detail out of consideration to those squeamish readers, the surgery will involve breaking both of my thigh bones and then re-angling them in order to put the hip joints back together properly. This will then be held in place with metal plates, which will need to be removed in another operation a year later, at which time my hamstrings will also be surgically lengthened to stop them pulling so strongly.

We are expecting a date in September for the operation and I will be staying at the Evelina for at least five days (you will remember I was a guest there last year when my feeding tube was inserted). Still, at least I will get to spend a week away from my annoying little sister, who only this morning attacked me with a plastic train.

Dolphins are go!

May 31st, 2013 § 0 comments § permalink

I am going to begin this post by apologising for the radio silence of late. You just can’t get the staff nowadays. Also, we have been extremely busy and time seems to just fly by. Since I had my feeding tube inserted in October I have been a much happier and more settled boy which means that we have been expanding our social schedule!

Anyway, enough small talk. Or type. On to the more exciting news. As those of you who have so kindly contributed to our fundraising efforts will know, our most recent target was funding a trip for me to have dolphin therapy in Florida. Thanks to the generosity of so many, we have had the required funds ready for some time. However, we hit a brick wall in the form of my hospital paediatrician. As I have epilepsy, the dolphin centre (www.islanddolphincare.org) require  confirmation from a doctor that it is safe for me to participate in the programme, which my paediatrician refused to do. Although they had some sympathy for this given that we are already well into a case of legal action against the NHS, my parents were (ahem) mildly irritated. They tried to convince the doctor to change her mind but to no avail. It seemed a bit hopeless really.

And then… enter Dr Charlie Fairhurst, my new consultant at the Evelina Children’s Hospital. We have been great fans of Dr Fairhurst since our first meeting with him when he opened with, ‘Call me Charlie. I don’t do any of this Dr Fairhurst thing.’ Incredible! thought Mummy. A consultant with excellent people skills? Can this mythical creature really exist?

Exist he does. And after considering the situation, including the fact that I haven’t had a recognisable seizure for about a year and that my seizures have only ever happened when I am asleep (which I am arguably unlikely to be whilst in a large tank of water with several large marine mammals), Charlie came to the sensible conclusion that this experience is unlikely to put me at any great risk. He wrote to the centre confirming this.

And so the planning begins! We are currently thinking to fly out to Florida on 8th May next year and spend two weeks in Orlando, meeting Mickey Mouse among other activities. (Mummy would like to interject at this point and reassure my benefactors that this sideline jaunt will not be paid for by Support Sasha funds!) We will then fly down and spend a couple of days in Miami before starting my therapy programme on 26th May 2014.

Amazing! And a huge thank you to every person who made this possible.

Happy New(ish) Year!

January 19th, 2013 § 0 comments § permalink

So, it’s 2013. This is the year I will turn 4 and my parents have taken a little time to think over how things have changed since I was born.

Firstly, we had a lovely Christmas. The best one of my life so far. Although Santa didn’t bring me the gift I really wanted (a Sister Disposal Machine) he did bring me a very nice switch adapted remote controlled Thomas the Tank Engine. We spent Christmas at Nanny and Grandad’s house. I was so happy all day and I suppose Gabbie was alright as well.

Also, I have finally settled in to school! I am spending Tuesdays and Wednesdays at the Phoenix Preschool on Masons Hill in Bromley. In the beginning, I was cross about going there. Very cross. And I was determined to make my feelings known. Thanks to the nothing short of saint-like devotion and kindness of the staff there, I did my first full day the week before the Christmas holidays and now there are even times I don’t want to go home when Mummy picks me up at the end of the day.

The Support Sasha fundraising is going well. We now have the money for dolphin therapy and recently met a lovely new doctor, Charlie Fairhurst, who agreed to sign me off for the trip – my epilepsy means that I need a medical ok. Any future fundraising efforts will go towards an electric wheelchair.

So all is good. Bring on 2013!

My champion daddy

November 14th, 2012 § 0 comments § permalink

I know everyone thinks they have the best daddy in the world, but I know I have. He spent today in a wheelchair to both understand how this affects daily life, and to raise money for the Support Sasha fund. He did his daily commute to London and a full day’s work, then commuted home again.

He arrived safely and in one piece, although tired and achey. We are so very proud of him. He has raised £824 so far; thank you so much those people who have so generously donated. If you have not sponsored him yet and would like to please go to bit.ly/wheelchairday.

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