Please help us to get severely disabled Alexander to see the Muppets at DisneyWorld Florida. I hope that you feel like us that he really deserves the chance to have fun and do some of the things that others take for granted.
Alexander, or as he is known to his friends, Ginger, is mad about the Muppets. He never goes anywhere without Kermit the Frog hanging from a ring on his thumb. Kermit is his constant friend. He has Muppet DVDs and videos, books and cuddly toys and bedding. Even a cardboard cinema display from the Muppet movie.
it would be a lifetime event for him to visit the Muppet Studio in Florida.
However, Ginger is 27 years old, confined to a wheelchair and dependent on others for everything. He has Down's syndrome, quadraplegic Cerebral Palsy that affects all four limbs. Dystonia that makes his muscles constantly writhe and move, Mitral Valve Syndrome (apparently the most common type of congenital heart defect) and is severely short sighted (actually registered Blind). He uses a Tellus speech aid to enable people to understand what he is saying and drives an electric wheelchair with his right foot, the only part of his body that he can rely on. He has moderate learning difficulties.
And to top this he is a red head!
The holiday insurance alone for him is £3500, the cost of a normal family trip to Disneyland. Also to make this possible we have to hire a wheelchair adapted villa and specialised equipment such as a profiling bed, tilt in space commode cum shower chair, hoist for lifting and handling, a wheelchair adapted vehicle and support care workers to make daily living possible. Unfortunately, years of caring for Alexander has taken a toll on my body and, my husband, Adrian's plus we are no longer young so caring 24:7 on our own would be extremely difficult and could potentially cause us further damage.
Ginger may have complex needs but is always ready with a smile or a cheeky comment. He's a redhead with a wonderful personality (I know I'm his Mum but everyone who meets him says so!). He loves people watching, wheelchair dancing with ActOne Dancebase and singing in a "band" with the Electric Umbrella. Christmas 2016 he performed for 1000 boys singing Jingle bells at the Merchant Taylors School Christmas Assembly. Take a look at https://youtu.be/1feyQAOwamY. They were all absolutely spellbound. Such an achievement for someone who finds speaking so difficult. Alexander is a hero! We are so proud!
Ginger has had a difficult life with lots time in hospital and recovering from operations. He was born nearly seven weeks premature and had his first operation a few days later for duodenal atresia (he didn't have all his intestines). This scar right across his stomach has since been "unzipped" four times for other operations. As a baby, Ginger spent months going every two weeks to have his larynx lazered as he had an extreme version of thrush that had eaten away his vocal cords. He was also very anaemic and it was thought that he had Leukaemia. So we spent his second Christmas eve having a blood transfusion with blood specially brought in from Germany as this was the height of Aids and they needed to make sure the blood was not contaminated. Thankfully, it turned out to all be caused by a blockage where his intestines had been joined together - this meant another operation. There have been too many to mention .
He was under the world famous Great Ormond Street Children's hospital until he was 19yrs old and at one point we were seeing ten different departments owing to all the problems he had! It felt as if we lived up there with Adrian visiting after work.
In 2000 he became paralysed down one side and had fusion to repair Atlanto/Axial Sublaxation in his neck which involved a metal plate in the back of his skull, metal rods in his neck and a rib removed and crushed up to fix it altogether. Owing to his constant body movement caused by his Cerebral Palsy and Dystonia he also had so wear a "halo" for four months to ensure that his body didn't destroy the surgeon's hard work. This had to be tightened every week and this process was very painful for him. However,you can see him smiling in the pictures despite all this.
Sadly, despite getting his feeling back he became depressed. Alexander told us that he thought that after the operation he would be a "real boy" i.e. all his disabilities would go away as everyone had told him it would make him better. This was spotted by a wonderful teacher, Mrs Morgan, at his main stream Junior School, Abel Smith, and she was responsible for putting together a stimulating programme to get him back to his fun loving self.
We nearly lost him in 2004 when he had full spinal fusion for scoliosis. In an eight hour operation, they put rods all the way down his spine and into his pelvis. He had been back on the ward for about twelve hours when he went into septic shock. It was like being in an awful dream and part of a hospital drama as I ran along behind his trolley as people held open doors and the nurses rushed him through Great Ormond Street Hospital, up lifts and along corridors to intensive care. We were so lucky that he was already a patient and they had space for him. The nurses and doctors were all wonderful.
Once this was all over, he lived in constant pain, and after nine months of tests it was discovered that he had broken one of the rods going into his pelvis. His body was fighting the fusion. Further severe pain continued until three years and many more tests later it was decided to open him to take the rods out as they thought he was allergic to Titanium, which is almost unheard of. In fact, he had a broken vertebra and an MRSA type bug that was preventing it from healing. A course of high doze powerful antibiotics later and the vertebra healed. He still has pain as his body will always fight the rods but without the rods his ribs might have punctured his organs.
Please help to make our dream for our son come true
We would love to be able to go this April when the weather is good but not too hot as Alexander would not be able to cope with the heat or rain that comes later in the season. If necessary, we could go next year. Disney advise that the Muppets will definitely be there this year but who knows for next year.
This would be a three in one once in a lifetime event:
1. See the Muppets up close as many times as he wants during the trip
2. Get to swim with dolphins - this would be both therapeutic and wonderful as Ginger loves water and "fish"
3. It would be a family holiday - we haven't been able to have one since a long weekend at CentreParcs in 2006 when Alexander was a lot smaller and we could handle him without equipment. We don't see this as a free holiday for us but a holiday of a lifetime made possible by the additional funds of kind generous people.
Alexander or as he said to Father Christmas (he still believes) this year "call me Ginger" does not know and it will be a great surprise. We will be forever grateful to your generosity.
Please help make if Go Kermie! Go Gingie!
Thank you, Davina and Adrian