Syston Town News » Declan’s Diary

Declan’s Diary April 2012

admin — Sun, 01 Apr 2012 04:05:23 +0000

This time four months ago to the day, we were settling into the Queens Medical Centre ready for Declan’s surgery in the morning. It has been a real roller coaster over the past four months and unfortunately there is more to come. Although Declan made a fantastic initial recovery, there has been quite a few problems since, as four months down the line Declan is more like how he should have been a month after surgery. We are awaiting results of a MRI and CT scan as there has been damage in his hip area, but without these results we don’t know if it is something that can be repaired with surgery or if he will never recover more than he is now. At present he has lost feeling in his right hip radiating to his lower back, although he has lost feeling in it, it is also hyper sensitive so even pulling up his trousers is painful for him. As he had to stay so long in bed his knee tendons are also very tight, which together with his hip is making tolerating his chair very difficult. We have now built his tolerance up to six hours which is fantastic, but it is mainly in a very reclined position, which means he cannot see where he is going so effects his ability to go out. His arms have also got a lot weaker as has his neck. Thankfully he took a massive step forward last week and he spent an hour at school both on Thursday and Friday. School have been so supportive and have made him feel incredibly welcome on his return. At present he will continue to do only one to two hours twice a week, which after being house bound for four months is fantastic.

Many people who have visited Declan have said that he went into hospital a boy and has came out a man!!! Not only has he grown four inches, he has matured greatly and has also found even more courage. I am astounded and proud at how well he has coped with everything, he is truly an inspirational person. Due to being house bound this is only a short diary, but I’d like to take this opportunity to thank everyone who sent him a card, wished him well and have visited, it really has been very heart warming to see how loved he is.
Alexandra Spencer

Declan’s Diary December 2011

admin — Thu, 01 Dec 2011 04:08:28 +0000

This month’s diary is derived from a blog that Alex had been sending to us when Declan went into hospital to have major surgery on his spine. I hope I have captured the situation in my compilation of her snippets here.
Wednesday 9th November. Declan has been in surgery for three hours now. It’s been the longest three hours of my life. I’m sitting here reflecting on what an amazing person he is and how a mothers love really is so unconditional. My heart is breaking that his life is in someone’s hands at the moment and all I can do is sit and wait. At 9.50pm she said my gorgeous brave boy is now on intensive care, the operation went really well and their all shocked how well he is doing. He has even spoke to me and been sick on me lol! He’s not out the wood’s yet but it’s so good to be with him.
Friday 11th November. It’s now 52 hours since Declan came out of surgery. He has amazed everyone with how calm he’s been and how well he is doing. The operation went really well and Declan now looks a foot taller!! He’s got a infection but it’s under control and his breathing is getting stronger.
Monday 14th November, Day 5 after surgery and Declan is still mainly asleep but thankfully when he is, he is not in pain. When he’s awake his back is really sore. He’s not managing to eat and his breathing is very shallow, so not out of the woods yet.
Tuesday 15th November, Day 6. Dec’s pain is getting better and he’s awake a lot more. Unfortunately his veins are damaged and as he’s being sick they are now having to insert a feeding tube via is nose to give him his medicines and some food as he hasn’t eaten anything since a yoghurt the day after his surgery. His breathing is still shallow but he is more comfortable than he was. They have changed his dressing so I have now seen this war wound. They have done a incredible job. It runs from the base of his neck to his pelvis. His spine did curve right over to his right side where as now it’s completely central. Although feeling groggie he is so glad to have home ahead with the operation behind and is even happier (his first words after surgery) to be alive!
Wednesday 16th November, Day 7. Declan is exhausted after being sick all night despite him now being fed and having his medicine via a tube that goes through his nose to his stomach. As he can’t move all the fluid that he brought up just trickled down the side of his pale face. He looks so fragile. They have been trying to take bloods today but can’t get any with his veins being so damaged. Today is another day and hopefully he will be stronger and can keep his medicines down as he has been without pain killers now for 24 hours.
Thursday 17th November, Day 8. Declan is still continuing to be sick despite having the ng tube which is so heart breaking as it was so traumatic for him when it was being done but he hoped it would be worth it if it stopped the sickness. I cannot begin to express the fear that I had whilst Declan was in surgery and the thoughts that flowed through my emotional mind. It was the first time that I really appreciated the reality and pain that the future holds. I know that one day the fear of not being able to cuddle, care and be a mum to Dec will be a reality and it breaks my heart. I’m laying here now by his bedside, the eve of my 30th birthday and am not one bit disheartened that I will not be having a big party tomorrow to celebrate my birthday but carry on to breath in the sheer delight that for now, my boy, my everything is by my side breathing and holding my hand.
Friday 18th November, Day 9. I am so so proud of my strong son who sat in his wheelchair today and has had the ng tube taken out as he hasn’t been sick for a whole 18 hours. It seemed so strange to see him in his chair, so straight and tall. His neck muscles have gone very weak so he struggled a bit and will need a different type of head rest. Having my gorgeous boy feeling a bit better today is the best present I could ask for. As this is my last blog so Declan’s diary can go in the December STN, I’d like to wish everyone a very happy Christmas I hope you all have as special time over the festive period as I know we will have. Thank you for all the cards and prayers for Declan, all the positivity that is surrounding Declan is definitely one of the best Medicines.
Alex

Photo above is from Alex showing Declan on day 9.

Declan’s Diary October 2011

admin — Sat, 01 Oct 2011 04:07:28 +0000

Firstly can I apologise for no Declan’s diary for the past two months, we haven’t been away, just very busy. The school holidays seemed very long this year, with the weather not being the best, it was a real struggle to find things for Declan to do, so most of our time was spent watching films or killing zombies on the play station. After five years since diagnosis I still find myself having to justify things that I do for Declan, mostly holidays. I have taken Declan on three holidays since December when I was given the information that he needed spinal surgery. Declan is not spoilt, just a young man who needs to cram a life time into a very short time. The holidays that we go on are not like everyone else’s, where the parents rest whilst the children burn off loads of energy. My holidays with Declan consist of lifting him from his bed in the morning and frequent lifting throughout the day for swimming, drying and toileting. Declan has been unable to stand for over two years now and at over seven stone and five foot five this takes its toll on my back. The same as at home Declan needs moving several times a night so even the sea air doesn’t result in a good nights sleep for either of us. Whilst in the pool Declan needs me to be constantly next to him so that he doesn’t drown. Would I change the past holidays for more relaxing ones…….not at all. Declan gets so much out of being in the heated pools (he can no longer use public swimming pools) but I think one of the most important things is that we can just be a family. No distractions of hospital appointments, home visits, phone calls from professionals. Just a mother and son being together and enjoying each others company! If you spread the holidays he has been on in the past five years over the average life span of an average English male, is he really spoilt??? Any decision I have ever made in the last year has been with Declan’s sole interest, we don’t have carers, special needs schooling, school transport, me and Declan just get on with it. I ask anyone who has ever criticized my actions to come and spend twenty four hours with myself and Declan and you would soon realise the daily struggle and how brave Declan is.
Enough in justifying myself, as I know most of our readers read Declan diary with compassion and care for Declan. Declan will be celebrating his thirteenth birthday when this goes to print and unfortunately only a week after will be going into hospital for his spinal rod surgery. This involves a metal rod being screwed into either side of his spine throughout its entire length. It is a risky operation but is essential as without it Declan spine will get so curved he will not even be able to sit in his wheelchair. He will face time in intensive care and a very long recovery. The road to the operation has already started with appointments back and forth to the Queens Medical Centre in Nottingham where the operation will take place. All the pre-op appointments are to ensure the safety of Declan’s fragile body whilst undergoing and after the surgery. I won’t lie, he is very scared and so am I. Luckily Declan will be so sedated that he will not be aware of all the tubes entering his body to monitor it and give early alarm of any problems. There are several things that may complicate his recovery but once he has recovered he will be much more comfortable and will not be experiencing the pain he now endures every day. Due to his surgery I will not be doing a November Declan’s diary but will be letting the editor know how he gets on so she can let all our readers know.
On a very positive note, we have settled in very well to our new home and have some of the most amazing neighbours. There is a real feeling of community spirit in our little cul-de-sac. This really does make all the difference to our lives and I feel very blessed to finally have a real ‘home’ for Declan.

Declan’s Diary July 2011

admin — Fri, 01 Jul 2011 04:05:42 +0000

I cannot believe that it’s five years ago since I sat in a small room at the Leicester Royal Infirmary and was told that my seven year old son had Duchenne Muscular Dystrophy and wouldn’t be expected to live past the age of 18. Five years ago since everything I thought I knew, would change forever despite the fact that that was actually the case from the day Declan was born, how ignorance is bliss! Most boys are diagnosed with Duchennes by the age of four, this can be due to family history of the condition or the medical profession being on the ball. I noticed a difference between Declan and the other children of his age when he started school. He seemed to walk slower than the other children and didn’t jump like they could. At the age of five Declan saw a speech therapist as he had a stutter, common with boys suffering from Duchennes. I explained that more than the stutter I was concerned about Declan’s legs, that although his calf muscles were very big, a BIG visual sign of Duchennes, his legs seemed very weak. He was referred to a paediatrician who said that Declan had dyspraxia despite the fact that I said I felt it was a muscular problem. I was simply told to not use my son as a case study for the child care diploma that I was studying. Due to this diagnosis, Declan was made to do special PE lessons at school as instructed by the paediatrician, which meant him doing all the physical activity that boys with Duchennes should avoid. As his mum, no one was interested in what I thought as I was ‘just a mum’. It was in fact the diploma I was studying that made me sure the hospital was wrong. Declan simply was not meeting the gross motor skills of a boy his age and if anything was degressing. After qualifying I plucked up the courage to stand firm and try to get a second opinion, I knew without a doubt that Declan did not have dyspraxia and that it was muscular, I just didn’t know what. Thankfully Dr Hurwood didn’t treat me as a over protective mum and listened as I gave a detailed account of what I now know is a text book description of Duchennes. A week later I found out I was right, it was muscular but that nothing could be done for him, nothing could prepare me for that.

There are 1500 boys in the UK with Duchennes, parents have been told for the past 20 years that a treatment is nearby, yet still there is little really known about this condition or a treatment let alone a cure. Declan has a very rare mutation of Duchennes which no research is even going into. After Declan was diagnosed I decided to raise awareness of this heart breaking condition and used my child care contacts to do talks on Duchennes to people studying child care and social work. Early detection can not only mean the start of physiotherapy, which can prolong walking but can also mean the family have time to prepare for the adaptations that need to be made within the home and school, but most importantly the parents and child will not be treated like they are attention seekers or misdiagnosed leading to undue stress.

Five years ago Declan was able to walk, stand, climb the stairs, run up to me to give me a big hug, and was a ‘healthy’ little boy. Five years on, he hasn’t took a step for over two years and is now unable to even hug me without me lifting his arms to put them around me. What a difference five years has made. Has it made it any easier to deal with the diagnosis, NO as I am still trying to come to terms with him having Duchennes but I am also now trying to get my head around the fact that he needs very risky surgery and that every day brings a new struggle and new heart ache. The curvature of his spine is now bringing pain to his right hip and even effects how his clothes fit him. He desperately needs the surgery now, as the more his spine curves the harder and riskier the surgery. On writing this diary we do not have a date for his surgery but after going to a hospital appointment recently we have been told that we could be given as little as a weeks notice and they hope it will be before flu season, due to the need for an intensive care bed.

Declan is very near to the end of his first school year at Wreake Valley and I’d like to take this opportunity to thank all the staff who have made him feel so welcome and have helped him to settle in and thrive. Moving schools is a massive emotional move for all children but for Declan it brought extra worries of being in a class with people who never knew him when he could walk and also how he would be treated by staff. Declan remains pleased that he chose to go to Wreake and is looking forward to many years studying there and continuing to make new friends.
Alexandra Spencer

Declan’s Diary June 2011

admin — Wed, 01 Jun 2011 04:05:31 +0000

Only one more month and Declan will have successfully completed his first year at secondary school. A one to one carer has now started working with Declan at school which is going really well and Declan has formed a great bond with her. We have now moved just opposite the school, it is so great to be back into Syston and to have a ‘home’ which is totally suitable for Declan’s needs. At present we don’t have a disabled bathroom so I am still having to lift Declan in and out of the bath; however he will soon have a fantastic bathroom with a specialist bath, sink and toilet. In the Easter holidays one of Declan’s friends who went to the same primary school as him, knocked on the door to see if Declan could go out. The smile on his face was so priceless, finally he could do something all his mates were doing, playing out and being independent. Armed with his phone and a couple of pounds for a cone of chips he drove off into Syston with his friend, it was such a precious moment.
We went for Declan’s follow up spinal appointment last month, to be given the sad news that Declan’s curvature has developed by a further 12 degrees, so it now has a 36 degree curvature and surgery is a definite. Due to Declan having Duchenne’s, which makes surgery very risky, he has to see several different specialists before surgery who will be present during the operation. I do not have a date at the moment but have been told it will be before flu season as Declan will need a bed on the intensive care unit and these are always taken up during flu season. He is being so brave about it and knows it is for the best and will help him to breathe easier and will lessen his pain but he is so scared about not waking up from the surgery. The operation will be performed at the Queen’s Medical Centre in Nottingham by an amazing man called Dr Sell, who we have total faith in.
After entering a competition for a track day at Silverstone, Declan’s 150 word explanation of why he is a ‘petrol head’ has won him a day as a passenger in various Porche’s including a four by four on a dirt track. The cars have been fitted with special sitting and safety belts so that he will be safe and secure. He is so excited about his special day and I’m sure it will live up to all his expectations and more.

Alexandra

Declan’s April Diary

admin — Fri, 01 Apr 2011 04:08:17 +0000

As I sit writing this months diary, I am filled with dread. We are due to move out of our bungalow in Rearsby on the 12th March but the new house is nowhere near ready. I am unsure what we are going to do as social services have said they can’t help and the council have told me that they have no emergency housing for people who cannot walk! I cannot believe that four and a half years down the line housing is still such an issue. I remember when Declan was first diagnosed, I had a few comments about how disabled people are given everything. Oh how I know differently. From the day Declan was diagnosed I have had professionals telling me what I should do, how I should feel and even how Declan should feel. Declan seemed to become the governments property and as his mother I lost all rights and had to fight for anything I disagreed with. It is far too easy for society to put all disabled children in a box, where they go to a special needs school in provided transport, have carers in morning and night and stay away from the public eye the rest of the time. If you do not comply with this you have a fight on your hands to just provide your child with a ‘normal’ life. You don’t get extra help with bills although your utility bills are high due to charging hoists and wheelchairs and trying to keep the child warm, yet people always assume that you do. To have a disabled child isn’t about what you can get from the government, its trying to get through every day with a smile and a strong heart while my brave boy is still here.
You may remember me writing about the curvature in Declan’s spine in my last diary. Unfortunately it has got a lot worse so it looks like surgery is the only way forward. We do not have a date as of yet but I can hopefully include it in my next diary as I know you will all be hoping for a safe recovery for him.?
On a more positive note, Declan is continuing to enjoy his new school and loves being able to join in with the practical in science lessons. He remains positive and brave and like every other 12 year old boy, he tests my patience from time to time, but the way he deals with everything that is thrown at him is remarkable.
Alexandra

Kate’s Losing Weight for Declan’s Charity

admin — Fri, 01 Apr 2011 04:02:21 +0000

This time five years ago, I was planning a holiday in Cyprus with my two daughters and grandson. We had been through some rough timesand were looking forward to a holiday together. My older daughter was in the final months of a two year course in childcare, hoping to make a better life for herself and her son. Due to ongoing health issues, the course had not been easy. She had a major operation at one point and missed herstudies for a short while, so we wanted to celebrate the fact that she had managed to keep going and came out with an A* in practical and theory. We came home from the holiday full of hopes and dreams for the future. Those dreams were shattered within weeks. On 3rd July 2006, we were given the devastating news that my grandson was suffering from Duchenne Muscular Dystrophy.This is a life limiting disease which has no cure. I have since made friends with a lady who was told 28 years ago that a cure was in sight and would be here within ten years. We were told the same in 2006. Believing this, we set up a trust fund, hoping to take Declan to the first country that came up with a cure. We were desperate to save his life, as we still are, but unfortunately, we have to accept the fact that it probably won’t happen due to Declan having a rare mutation, which to our knowledge is still not being researched.
Prior to all of this, my daughter suffered with a mysterious illness at the age of 13. She went from an athletic student to a frail teenager who showed signs of having a brain tumour, as told to me by the staff who did preliminary tests when our doctor referred her to hospital for observation. Once all tests were proved negative the whole attitude towards her changed. She was misdiagnosed with school phobia by the very consultant who was shamed later for wrongly diagnosing epilepsy in children.His form of care was to instruct the physio to force my daughter to complete given exercises in the hospital gym, attend the school, and worst of all to suggest that I stay away and allow him, in my opinion, to basically practise child abuse. I decided to follow my intuition and released her from his clutches. Eventually, a diagnosis of ME/Chronic Fatigue Syndrome was given. It all made sense at the time. She had a lot of the symptoms. Unfortunately, that was the start of years of emotional trauma due to the lack of knowledge and the stigma attached to the illness. I struggled alone, as I was advised that social services were removing children from their families because they did not believe they were ill. I distanced myself from negative people as it was draining my emotional resources. To this day, my daughter still suffers with health issues, including acute endometriosis, but is battling to give her son the best life possible. As a family, we are all doing our best to help.
I have worked for Syston Post Office for the best part of 26 years. In the past, I have raised thousands of pounds for childrens charities, including Rainbows Hospice. I am now raising money for my grandsons trust fund by shedding the pounds I have piled on over the years through comfort eating. I also want to be able to have the energy to help more with Declans care as one of the suggestions by social services is to send Declan to foster carers in Coalville every other weekend. To me, family is precious and we try to spend weekends together, especially for Sunday lunch, therefore foster care is not an option.
I am being helped by our local diet and fitness guru, Rosemary Conley, who has been very supportive and is impressed by the 22 pounds I’ve lost in eight weeks. The money raised will go straight into Declans Miracle Donations, which has paid for a specialised electric bed and many other items which are necessary in the day to day living of a Duchenne boy. My daughter has chosen to be
Declans full time carer. Those of you in similar circumstances will understand the need to be on hand in emergencies. In effect, she is saving the tax payer thousands of pounds as it is very costly to provide professional care. On top of that, the life of a Duchenne boy is very scary. In Declans case, as probably with others, he is at a very emotionally delicate stage of his life and does not need the added stress of allowing different strangers to cater to his personal needs.
Ali and Declan are moving back to Syston next month. This will be their fifth move in less than five years. When Declan was diagnosed, they lived in a lovely terraced house in St. Peters St., which was their ‘home’. They did not want to move, but due to the fact that the house could not be adapted to Declans needs, they had to accept that their fate was in the hands of the council. Ali has been accused of being too choosey by people at the other end of a phone who cannot, and even refuse to really comprehend, the sheer stress of fighting for a sons human rights. If your son was destined to have problems with his lungs, would you accept a house full of damp with a bathroom beyond the galley style kitchen which was too small for an electric wheelchair, or a small bungalow beside a garage cum MOT testing centre! Until anyone has to actually live with the devastation caused by this cruel disease, they are in no position to judge.
I would like to take this opportunity to thank the Head and staff at Wreake Valley Community College for welcoming Declan with open arms. Whilst Duchennes is a physical disease, it is not a mental one, which has been recognised by all involved. Declan wanted to stay at mainstream school with his friends and this has been fully supported. He is our little hero, as the majority of 12 year olds are daunted by the thought of ‘big school’, he has taken it in his stride. He knows what his prognosis is and does his best to stay positive and cheerful. Hopefully, his new peers will learn to admire him and help him through this time at Wreake.
I would also like to thank all my customers who have been very supportive over the years. We have had to learn to put on a brave smile, but behind the smiles, there is still a lot of heartache. Our love for Declan is our driving force.

Declan’s Diary February 2011

admin — Tue, 01 Feb 2011 04:01:04 +0000

How quickly Christmas comes and goes, the only signs at my house that it ever happened is orange centred quality streets still sitting in the tin!
Unfortunately we had some bad news just days before Christmas. A routine hospital appointment discovered a bad curvature in Declans spine, severe enough to need an operation. The operation needed is a full day surgery, with a high risk and long recovery with several days in intensive care. My heart broke as the doctor started to tell Declan that he needs surgery. His face went scared and fragile, thankfully my brother was there so he could take Declan out of the room whilst the doctor explained the details to myself and mum. The operation involves a metal rod being fitted to his spine, with bolts in every vertebrae. After surgery Declan will sit rigid and further implications to the surgery are a high risk. Declan would benefit from the surgery with his heart and lungs having less pressure put on them. Some boys choose not to have the surgery and as I write this Declan is adamant he is not having it. We go back to see the consultant next month.
The saying ‘you don’t have to be mad to live here, but it helps’ was definitely true to my house over Christmas. Myself and my family made it a crazy Christmas that none of us will ever forget and many smiles were seen on Declan’s face. Declan’s favourite part of Christmas day was when we lifted him out of his electric chair and went down the road on a sledge, whilst racing my brother who was on another sledge. Declan loves the snow, so to have a white Christmas was a real treat.
Our house in Syston is coming on well, but we are yet to have a moving date. It will be so brilliant for Declan to have the independence of living minutes away from his school and friends.
I hope all our readers had as much of a special Christmas as we did and I wish you all the best for the new year.
Alexandra

Declan’s Diary November 2010

admin — Mon, 01 Nov 2010 04:06:58 +0000

I cannot believe that Declan is now 12!!!! He celebrated his birthday on the 3rd October by having a house party and BBQ the night before. Friends of all ages came to wish him a happy birthday and a brilliant night was had by all who came. Declan may have turned 12, but he is more like a teenager now, he is becoming so grown up and opinionated it’s hard to believe he’s wheelchair bound, with his wicked sense of humour and positive outlook on life.
We made our six monthly visit to Great Ormond Street Children’s Hospital last month which is always a nervy time. They were not surprised by Declan’s deterioration, but couldn’t believe just how grown up and tall he is. There is still no light at the end of the tunnel in the way of treatments, so as always the advice is to give Declan the most comfortable and enjoyable life possible.
The building of the new house is all finished and the stud walls are now up, as are the stairs. After several meetings we have made a new bathroom layout so that Declan can actually get into it. We have presently raised £500 towards the equipment needed for the bathroom but are far from the £14,000 needed, so any fund raising ideas are very welcome. Any donations can be made to Declan’s Miracle Fund at the Barclays Bank in Syston.
Alexandra

Declan’s Diary October 2010

admin — Fri, 01 Oct 2010 04:01:12 +0000

As I write this on 10th September, Declan has just completed his first week at Wreake Valley College with a massive smile on his face. I cannot thank the staff enough for making him feel so welcome and safe at their school. He looks so grown up in his new uniform, it’s hard to believe that he will be 12 in a few weeks. Like all kids he is getting very excited about his birthday and making a list as long as my arm of presents, however the present he wants the most, but cannot be bought, is to be able to walk again. It broke my heart when he told me this, if only the wishes you made when you blew out the candles on your birthday cake really came true!
The tenancy in our adapted bungalow is nearing the end, but thankfully we have somewhere lined up back in our home village of Syston. In February, 11 new houses will be ready at the back of Jack Hardy Close, which have been built by East Midlands Housing Association, with one ‘special provision build’. Unfortunately they have run out of money and there will not be any specialised equipment in the bathroom, but there will be a through floor lift and wider door frames. As Declan is getting older and weaker, specialised bathroom equipment is essential both for Declan’s safety and dignity. Boys with DMD need bathroom equipment such as a wash dry toilet, large height adjustable sink, height adjustable bath with a changing bench. These are all needed as Declan cannot stand or straighten his legs and cannot help with his own personal care. A wet room is not an option as Declan gets very cold and the jets from the shower can also be quite painful for him. A bath needs adequate support as Declan’s core muscles cannot support him now. We are really looking forward to moving back to Syston, where Declan can be closer to his friends and school. We will be raising money for the bathroom equipment so keep an eye out for future events.
I want to take this opportunity to thank everyone who showed concern when there wasn’t a Declan’s Diary for a few months, it was very kind of people to contact the STN to check if Declan was alright. The couple of months I missed was due to being too busy preparing everything for the transition of Declan going to secondary school, I had to have several meetings and simply didn’t get a minute to myself, it is lovely to know that people do read this and do care, so thank you to all our readers.
Alexandra