Syston Town News » Declan’s Diary

Declans Diary from Australia!

admin — Sat, 01 May 2010 04:01:42 +0000

Project oz blog…..day 7 Sunday 4th April.
What a long flight, we left our house at 6.00pm on Sunday and arrived at Sydney Tuesday morning, by the time we got to our hotel we slept until the next morning. A monster sleep of 18 hours!!!!!!
Declan was amazing during the flight, he never complained and just enjoyed watching back to back films and talking to me about what we were going to be doing.
On our first full day of the trip, day three, it was raining and colder than England when we left, so we took this opportunity to do all the indoor attractions. We started of with Sydney aquarium, which was fantastic, Declan loved seeing all the native fish and going through the glass tunnel where he could see sharks swimming above him. We next visited the wildlife centre, which is home to one of the worlds biggest crocks, although he was sleeping whilst we were there. Declan’s favourite part was seeing the kangaroos, he found it really funny that one was laying on his back with his legs in the air just like our dogs do. My favourite part was the butterfly area, which had butterflies the size of dinner plates flying around, the colours were amazing and they really took to Declan and kept landing on him.
Declan still hadn’t had his daily fill of animals so we went to the world’s biggest Imax cinema to watch a 3D under water film, it was fab but to be honest my sister and I fell asleep, jet lag.
On day four we woke up to the sun, but then realised that I had forgotten to put Declan’s chair on charge so we had to hang around the hotel whilst it charged. Later that day we took a ferry to the Opera House which was amazing, we took plenty of photos and also laughed at the silly people climbing the Sydney bridge!!! Well I say silly only because I’m far too scared of heights to do anything like that.
Day five and with a full battery on Declan’s chair we took a ferry to Manly Beach, it was so beautiful, but very full. We found a ramp to go down and set up camp for the afternoon. We took Declan to sit in the sea, he must have sat there with the support of my sister behind him for well over a hour. I must admit it was a bitter sweet sight as there was a baby crawling on the beach, able to explore and plenty of children swimming and even attempting to surf, yet Declan, aged 11 couldn’t even sit in the water unaided. However he was so happy and never moaned, he just enjoyed the warmth of the sun and sea. He really is a amazing young man, whom I feel very humbled to be his mum.
Day six was our last day in beautiful Sydney so we got up early and ventured to the harbour as Declan wanted to go on a sight seeing speed boat. We booked onto one but then was told if he was unable to walk onto the boat he would not be allowed on, so after getting our money back we tried another one who would allow him on as long as I could lift him on, so my sister and I ate our spinach
and lifted Declan onto the speed boat. I wish I hadn’t as I turned green with sea sickness. Declan on the other hand loved even second of it.
That afternoon we flew to Brisbane and just chilled out in the room and had an early night.
Day seven, Easter Sunday, and we started off the morning by reading lovely Easter cards that our family
had hidden in our suitcase, it was so lovely of them and made it feel like Easter. We then went for our brekki, which was a buffet, so we all ate loads to get our monies worth and left the table feeling like we wouldn’t need to eat again for the rest of the holiday. We then met my best friends mum who lives out here and spent the day in her town, which was so typical ‘home and away’ Australia and a real treat to visit. We sat with the locals and ate fish and chips, it was the first time Declan had actually finished a meal since we arrived, but the good old British fish and chips is one of his favourite meals. After our day by the sea we had an early night ready to travel up to Malloolaba the next day.

Declan’s April Diary

admin — Thu, 01 Apr 2010 04:01:42 +0000

This morning I hugged my gorgeous boy as I was getting him dressed for school. He couldn’t lift his arms to hug me back and he started to cry. The doctors don’t give you a hand book on how to handle the frustration and emotions that come along with Duchennes. How can you tell your 11 year old son that its “ok” that he’s loosing the strength in his arms and that everything will be alright? You can’t, can you, you just have to hold him and wipe away his tears whilst fighting back your own. To be a parent and not be able to protect your child from this pain is unbearable. My love for Declan is more natural than my own heart beat, but this natural, unconditional love can not beat Duchennes. Nothing can!
When you read this, we will be in sunny (hopefully) Australia, on Declan’s dream trip and he is so excited. I am hoping that during our time in Oz Declan can simply enjoy himself and forget, or put to the back of his mind, what is happening to his body so that he can have a really amazing time. Whilst we are in Australia we will be visiting Sydney, sea world, Tangalooma Island and of course, the main reason for going Steve Irwin’s zoo. If you would like to follow us on our journey please join Project Oz on face book where I will be adding photos and blogs of our adventure.
Once again, thank you to all that have donated and have contributed in making this wish happen for Declan and to Liam East of Millington travel who has spent hours making sure everything runs smoothly whilst we are in Oz.
For now, “Good day mate!”

Alexander Hill.

Declan’s Diary March 2010

admin — Mon, 01 Mar 2010 04:02:47 +0000

Although it seems like months ago I’d like to wish all of our readers a happy new year, I can hardly believe that were already in March!!
I want to start off by mentioning Harry, a good friend of ours who had Muscular Dystrophy and sadly passed away in his sleep just before Christmas aged only 14. His funeral was evidence of how loved and popular Harry was as there was barely standing room only. My thoughts are still with his parents whom grief is unimaginable. “Good night and God bless you Harry”.
On the 14th of December one for Declan’s wishes finally came true……a home in which he can safely move around in his chair. The smile on Declan’s face was priceless when he came with me to view the private property. The bungalow was built for a young lady who had been left wheelchair bound after a car accident, so all Declan’s needs can be met here. Things had got so bad at our tiny bungalow in Mountsorrel that my back and shoulder injury were making it near impossible to carry Declan around the bungalow and his new wheelchair, which is expected in March, wouldn’t have even fitted through the front door. The council were still unable to find somewhere suitable for Declan’s needs, so to finally find somewhere wheelchair friendly on the open rental market after months of looking was an absolute god send. Unfortunately we can only rent the bungalow for a year so our housing plight is still far from over, however we must live for the day, and at present we have a perfect home! Christmas couldn’t have been any better for Declan, he was able to drive his remote control Stig around the bungalow and he even enjoyed a ride on a sledge.
Declan’s physical ability continues to deteriorate with him now unable to wash his hands or brush his own teeth despite us now having the correct equipment, however his inner strength is amazing and his bravery continues to surprise me every day. My little boy has now turned into a young man that I am extremely proud of.
Until next month’s Declan’s diary, take care x Alexandra Hill

Declan’s Diary, November 2009

admin — Sun, 01 Nov 2009 04:01:04 +0000

October was an amazing month for Declan, turning 11 being the high light of it. In previous years I have dreaded his birthday…. Another year gone…another year closer to the end!!! Not this year, this year we celebrated the fact he is still here and can still light up a room with his amazing smile and humour. We celebrated his birthday firstly by arranging a surprise ride in a Rally car at ever man racing. When I lifted him out of the Subaru, the first thing he said was ‘mummy I never knew I could be this happy’ the smile on his face was a picture. That evening luckily the rain stayed off and we had a BBQ and Declan had some friends to sleep. It was lovely to see so many of our family and close friends who dropped by to give Declan presents and cuddles. Although there was a huge mess to clear up in the morning and I only managed to get a few hours sleep, I wouldn’t have changed it for the world. Our small bungalow has never been so full of energy and laughter, Declan certinately had a birthday to remember.
Unfortunately Declan’s strength is continuing to worsen, with him now being unable to use the controls of his Wii. Our housing situation is now getting unbelievable as when Declan gets his new wheelchair by the end of the year he will not be able to get into the bungalow what so ever!!!Yes you did read that right……his new larger wheelchair which is needed due to him now being 5ft 1 and 6 stone will not fit through the front door let alone manage to get through the tiny hall way to access any of the rooms. The council are still saying that they don’t have anywhere that is suitable for Declan’s needs. I am unable to get a mortgage as a single mum so rely on the council, housing associations or private land lords all which have so far come to a dead end, this is why I am making a plea to anyone in the Syston area who would consider doing a house swap who’s property could be adapted that is in a council/housing association house. Please please contact me if you feel you can help. Declan’s life is going to be short and painful but having a suitable place he can call home and have some sort of independence would be the best Christmas present besides a cure. Another way in which our housing problem could be solved is if a private landlord would consider their property being adapted, this would only increase the value of the property and there will always be a need for disabled housing so finding a tenant after us would not be a problem. If anyone has land in which a bungalow could be built, this is another possible solution as I have a potential investor who would pay for the build of a purpose built bungalow to rent to us. Besides these ideas I only have camping outside Charnwood borough council and hoping they will find a heart. I am not asking for something for nothing, just the chance to give Declan a decent quality of life, a life which is worth living and full of fond memories, not frustration as he cannot move in his own home and has to be carried everywhere.

Declan’s Diary September – October

admin — Thu, 01 Oct 2009 04:01:44 +0000

Declan continues to be very brave despite the fact it seem like his world is falling apart at the moment. At the end of August we had a holiday in Norfolk for a week in fully adapted cottages with nine other families with boys who have Duchennes . We had an amazing time, although it was a real emotional rollercoaster, seeing boys still walking in that typical Duchenne style and boys who are a lot further down the line than Declan. For once Declan felt completely accepted. The most rewarding part of the trip for me was sharing knowledge and tips with the other parents, and having a few cheeky drinks in the evening. But more than that was on the third evening when Declan tried to ride a specially adapted bike and for the first time ever I watched him pedal away and feel the freedom of riding a bike, whilst the other boy who is still walking had a go in his electric chair. Myself and Michelle the other mother were in tears, both of joy and pain, the boys were so happy, Declan was so chuffed that he had ridden a bike and Dan was loving the independence of a electric wheelchair without worrying about the risk of falling. I have already put our names down for next year as this really was a holiday to remember. Over the summer holiday I have noticed a real decline in Declan’s upper body strength, just to brush his teeth or raise his arm is near impossible.
I have been told about a solution called ‘easy arms’ which help take some of the weight of the arms to enable easier movement. These cannot be purchased on the NHS so all the past funds for equipment will be paying for them. So many thanks to all whom donated in the past, your donations are really being well spent.

Declan is celebrating his 11th birthday on the 3rd of October, I pray he has many more, never take your children for granted as you really never know how long you have them for.

Declan’s Diary, August 2009

admin — Mon, 31 Aug 2009 16:30:27 +0000

August was an amazing month for Declan (despite all the bad weather) team ‘Harley’ qualified as an accredited assistance dog team! This was a massive achievement and involved Harley competently picking up dropped items, walking along side the wheelchair, taking Declan’s socks off and sitting nicely in Rays Tray whilst we indulged in cake and drinks.
We were asked questions about the safety and welfare of a Dog for the Disabled assistance dog and Declan managed to answer all the questions without any help from me. Harley is now a real part of the family and is an absolute pleasure to have around.
The Team at Dogs for the Disabled are delighted that Alexandra, Declan and Harley have now qualified as an assistance dog team. We hope that the team will continue to develop, with Harley providing more support to Declan as their partnership grows. It is amazing to see what difference an assistance dog can make, not only in practical terms, but also to the confidence and self-esteem of our clients and their family. We wish them the best of luck in the future and look forward to working with them, Allie Hogsbjerg, Communications Officer, Dogs for the Disabled.
We are still £3000 away from Declan’s dream trip to Australia, we are now hoping to go in November so that we can have our Halloween fund raising disco as it has raised quite a lot of money over the past two years.
Declan continues to be very brave despite the fact it seems like his world is falling apart at the moment. At the end of August we are going to Norfolk with Duchenne Family Support group and are staying in a fully adapted cottage, which will be lovely. There will be ten cottages all with at least one boys with Duchennes, I am hoping that Declan might find some comfort in meeting others who have the same horrible condition as him as he is now aware of the full prognosis, there is nothing to hide from him anymore.

Declan’s Diary

admin — Fri, 31 Jul 2009 16:24:11 +0000

I am writing this on the 3rd July, three years to the day since the diagnosis of Duchennes took over our life. I can still remember the words the doctor said to me when I asked if it would only cut his life to maybe 60. “I’m sorry Alexandra, and the life expectancy is only 18”. The words still send a cold shiver down my spine. At this I had to walk out of the consultant room; I saw a poem on the wall, which read as follows:

HEAVEN’S SPECIAL CHILD

Author presently unknown

A meeting was held quite far from earth,
It’s time again for another birth.
Said the angels to the Lord above;

This special child will need much love
His progress may be very slow,
Accomplishments he may not show.
And he’ll require extra care,
From the folks he meets down there,

He may not run or laugh or play,
His thoughts may seem quite far away.
In many ways he won’t adapt, and he’ll
Be known as handicapped.

so let’s be careful where he is sent, we want
His life to be content

Please, Lord, find the good friends who, will
Do a special job for you. They will not realize it right away, the leading
Role they’re asked to play.
But with this child sent from above, comes
Stronger faith and richer love.
And soon they will know the privileges given,
In caring for their gift from Heaven.
Their precious charge, so meek and mild, in

Heaven’s very special child.

This poem, along with Declan’s smile, is what has helped me during these past three years and it is framed in my sitting room.

On 3rd June, Declan faced his hardest challenge yet. He was watching the world’s strongest child on TV in his room when he shouted, “Mum, they have just said that boys with Duchennes die young, is this true?” I cannot begin to explain the fear in his face or in by heart, I tried to shrug it off but he looked me in the eye and said, ”It’s true isn’t it?” All I could do was hold him as he screamed; luckily my sister was staying with us, so he had two people who adore him cuddling him. He asked several questions, such as why it kills boys at such a young age. I answered his questions as honestly as I could, and told him, that God thinks he’s too good for earth and I’m only allowed to borrow him because he is so special. I have to believe this and luckily Declan has found comfort in it. Since then Declan has shone out with bravery, he puts all adults who complain of headaches etc. to shame. He doesn’t often talk about it, but when he does, he talks about what a good time we’re going to have before he joins the other special angels.