Some of the special children we helped in 2011
Story of Thomas Burgess
This is Thomas Burgess whose mum, Carol, wrote to us requesting a holiday. Thomas, who is now 2, was born with Alagille syndrome which is a rare liver syndrome. During his first 2 years Thomas has been through quite a lot and it was now time to have some much needed and deserved fun time.
We sent the family to Centre Parcs and received the following from Carol on their return:
“We have got back from our wonderful holiday you booked for us it was brilliant and exactly what we all needed. Thomas absolutely loved it and had even started to talk while we were away. We went to the safari parc and did a lot of activities such as swimming, soccer, walking, craft activities and I had a spa. I wondered if you would like some pictures of our holiday. Thank you so much for our holiday it has made a huge difference to us”.
Thank you, Carol, Derek and Thomas xx
Story of Kaitlin
This is Kaitlin who is 9 years old. Her mum told us that Kaitlin has a rare genetic disorder called Kniest Dysplasia, which according to statistics affects one in a million people. It is a type 2 collegen disorder which effects growth, vision and the skeleton.
Kaitlin was born with bilateral talipes and was 40cm when she was born at 38 weeks. She is of short stature and has always had mobility problems and has had wheelchairs and a walking frame to help. Kaitlin has had a procedure to cryogenically freeze her retinas as this condition causes a high myopia and an increased risk of detached retina. She has also had two operations to correct her talipes. Last year she stopped walking altogether and even though we have had many x-rays and consultations no one at Great Ormond Street has given us a reason or indeed a prognosis.
Kaitlin suffers from a lot of pain and discomfort during the day and night and life can be very difficult for her. Whizz kidz provided a manual wheelchair for Kaitlin some time ago which has never really fulfilled her requirements and now she finds it very difficult to get in and out of it- I find myself lifting her in and out of the chair to get to the car and the house. The manual chair does not provide her with the correct posture support and we have been told in the past week that her spine has a marked degree of Kyphosis. We have the use of an old electric wheelchair at school, but this was given to Kaitlin when she was 5. It is very cumbersome to use in classrooms and at home and despite it being adjusted to its maximum capacity it is still difficult for her to get in to. She is also now complaining of pains in her hands and finger joints due to a general cartilidge degeneration throughout her body, which is a part of Kniest.
Due to a change in budget funding our local PCT has changed the way that wheelchairs can be obtained. I have recently found out that there is a one year waiting list for funding and though it can be applied for but it is not guaranteed. I applied last October. I kept chasing the department and was finally informed of this even though Kaitlin has had a dramatic change in her mobility and health.
If your charity could help us in anyway we would be so grateful. If you need any more information please do not hesitate to contact me.
Kaitlin is now the proud owner of her Very own super electric wheelchair thanks to WATT
Johnnie Everest’s Story
This is an extract from the letter we received from Johnnie’s mum:
Hello Gail, I don’t know whether you can help us. We live in Colchester and My son Johnnie attends Lexden Springs School. He is 7 and has a rare genetic condition called Apert’s Syndrome. In addition, he also has autism (only one child in every 20 million has both these conditions and we have only ever fleetingly seen one other child like him).
In June, we paid nearly £400 for an assessment at the sound learning centre in Palmers Green, London. From these tests, the centre says there is a 70% chance that Johnnie could start to speak after taking their 10 day intensive therapy course (see www.thesoundlearningcentre.co.uk). However, it is at a cost of £2,000. We had hoped to save up and get him seen last October, but he hasn’t been well enough and we just haven’t been able to save much money with all the hospital trips.
In July, Johnnie had a set of operations at Great Ormond Street Hospital to separate two fingers on his hand. A skin graft was taken from his tummy to put on the fingers. Due to the hot summer weather, having extra sweat glands and bandaging, the graft site on his tummy got infected and the skin graft on his fingers didn’t take. In the past when we have had hand ops, he has had 3 visits to hospital. This time it was unexpectedly 8 trips. Every week over the summer we had to attend a bandage change and surgeon check up at Great Ormond Street Hospital. Each time it cost £50 in petrol – £400 in total that we had to find out of nowhere. There was no alternative, or option to have this done locally. So no summer holiday for our other children and no savings towards the much needed therapy.
Johnnie’s condition comes along with numerous other problems including global developmental delay, no speech, dribbling, incontinence, smearing/eating of dirty nappies and constant ear infections/glue ear chest infections (due to the deformities of the skull and airways/ear passages etc). He has twisted feet with all the toes stuck together. He does walk, but has a wheelchair for when he is outside. He has no sense of danger, cannot read or write.
Last year he turned blue due to lack of oxygen due to inflamed tonsils. Unfortunately, he had to wait a year to have his tonsils out as he kept getting the ear/chest/throat infections to the point where he was never well enough to have the operation that he desperately needed. Johnnie was born with fused fingers, toes and plates in his skull. He has endured numerous surgeries to separate his fingers, and has even had the back of his skull completely taken off, more room made for his brain to grow and the back of the skull put back on. Due to the nature of his condition, Johnnie will continue to have operations until he stops growing. Due to Johnnie’s condition, and the regular operations/appointments etc. I am unable to work permanently due to the amount of time off I would need etc.. However, I got offered some temporary work recently doing a few hours here and there in a friend’s shop (covering illness) and have saved every penny towards Johnnie’s therapy treatment. The fund currently stands at around £260 saved towards the £2,000 therapy Apparently, there is a section of the brain that if left unstimulated, by the age of around 8 or 9 closes down and becomes unreceptive. Johnnie will be 8 in May. Therefore, we want to give him as much of an opportunity as possible by getting the therapy urgently. Johnnie has had a poorly couple of years and it is pretty impossible to find the money. I wonder if we would be eligible for help from your charity?.
I have attached a picture of Johnnie. I have an extensive report from the sound learning centre should you wish to see it, and am quite happy for you to contact them to discuss the treatment.
Thanks for taking the time to read this. I look forward to hearing from you.
We have, of course, paid for Johnnie to have this treatment and look forward to hearing about his progress.
This is the story of Andrew Hall.
We received a letter from Andrew’s mum which read as follows:
My name is Jackie Sibley I am mother to Alex Hall aged 18 who passed away on 9th September 2011 and to Andrew Hall age 16 who is terminally ill.
You were sent an email from Sue Bridger at Little Haven’s Children’s Hospice on the 5th April 2011 asking if you could please provide my sons with a “Starlight” projector. Due to the dire time we have suffered this year with both of my sons being in and out of hospital I have been unable to find the time to contact you directly as you asked. If it would still be possible could you please grant one of these to Andrew as he has borrowed one from Little Havens and we find it invaluable as we use it at bedtime for wind down and during this time it calms him and helps him go off to sleep but we can’t keep it much longer. Andrew knows he is dying as this has already happened to his brother and its during this quiet time when we are looking at the stars that he opens up and talks to me about his feelings.
These can be found on Amazon and due to the VAT increase they are now £104.99.
We were so humbled by the simple request made by Sue that we wanted to do something more for Andrew. After much organising of Nurses, Carers etc we arranged for the whole family of 12 to go on a much needed break to Centre Parcs.
We then received a further letter from Sue:
Thank you so much for your quick reply I am very grateful.
Thank you for your kind offer it would be really lovely if a short break could be arranged. In fact I awoke this morning and had a really strong feeling that I needed to take Andrew out, we have only been home from Little Havens for two weeks and have been in and out for three months before that and four weeks in Neptune Ward at Southend Hospital before that. so he has had no happy times for ages, so anything that could be arranged to make his last few months happy would be most gratefully accepted. Andrew is on a “Do Not Resuscitate Order” and the next big chest infection he gets could be his last as that is what took Alex from me in September. It’s all about quality now not quantity.
Andrew is bed bound and cannot speak but he can certainly make his feelings felt. He is a lovely kind hearted and polite boy that I am so proud of as despite being diagnosed with this horrible disease “Lafora Body Disease” he never ever complains. Sometimes he gets sad but he said he is not frightened I have used the 23rd Psalm to explain that his brother is up in heaven in gods house. I am glad I brought my children up to be Christian as it has brought them so much comfort as well as us. The worst thing about it is that his mind is still functioning he still has a great sense of humour and brings us such joy but he is getting locked in to his body which is so sad.
I thank you so much for your kindness.
This is the story of Lucy Watts
My name is Lucy, I’m 17 years old and I am currently studying for my A Levels in Biology, Chemistry and Applied Science at SEEVIC College.
Prior to 2008 I attended school full time, and in my free time pursued my passions for horse riding and horse care, photography and looking after my dog. Over the course of 2007 my physical state started to deteriorate and living my active lifestyle was becoming increasingly difficult. Sadly, as the year turned into 2008 my life as I knew it came to an abrupt end. I became housebound. I will spare you the details of the journey I have been on since or else we’ll be here for a very long time!
Eventually my diagnosis of Ehlers-Danlos Syndrome was made in the October of 2008. I have since also been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). Ehlers-Danlos Syndrome (EDS) is a connective tissue disorder caused by a defect in the protein collagen. For me, EDS has caused chronic pain, hypermobile joints that are unstable and dislocate frequently, severe headaches, poor skin and wound healing, chronic fatigue, muscle weakness and mild joint deformities amongst other things. It also affects my internal organs, resulting in trouble swallowing, gut dysmotility, bowel and bladder problems and affects my blood vessels contributing to the POTS. POTS is a condition of the autonomic nervous system and has left me unable to sit up for long periods of time because my body cannot regulate my blood pressure, heart rate and body temperature effectively. As a result of all of these, I am bedbound the majority of the time, rely heavily on medications to help me manage and have a PEG (feeding tube) to slowly pump in feed and medication throughout the day and night.
As I mentioned before, I am currently studying for my A levels. I completed my GCSEs obtaining an A*, three As, two Bs, one C and two distinctions with the support of home tutoring through the local Children’s Support Services, however this service is only available up to secondary education so the service finished once I had completed my exams. I attend college daily but I am only able to attend part time which means I miss out on vital lessons and practical experiments. The college have been very supportive and do their utmost to deliver the best education possible. I keep up by studying on my own from text books provided but there is only so much you can learn from this and I also miss out on the support from and social interaction with my peers. I hope to follow on from college by going to university to study medicine, with the long term goal of becoming a doctor.
I am totally dependent on my family and carers for everything. They assist me with my personal care, medication and feeding routines, bring me any items I require and as I am unable to self-propel I need them to move me around in my wheelchair. Aside from using my computer (providing it is brought to me!) I cannot do anything independently.
This is where I need some help. My mum is single-handedly supporting this family on a low wage despite working full time so there is no money left over for extras once the bills have been paid. I desperately want to gain back some independence and we have managed to raise the funds to buy a reclining electric wheelchair. However, I will not be able to use very much as I cannot go anywhere in it that is not in the immediate area (which may I add, is currently not very wheelchair friendly!). We need some help in funding the advanced payment on a wheelchair accessible vehicle, which will be anywhere from £1500 upwards.
If it would be possible for you to help in any way we would be extremely grateful. The car will make such a huge difference to my life and my independence.
Thank you for taking the time to read this.
It was our pleasure to fund the Advanced Payment.
We received a request from Aidan’s mum which read:
Dear Gail, I was told about your charity recently and was wondering if you had any funds available and would be able to help us please. My son’s name is Aidan he is 9 years old and he has cerebral palsy (all four limbs) and epilepsy. We are desperately trying to raise funds to buy him a new special needs trike – the trike approved by his physiotherapist cost £1,187.94 and unfortunately my husband and I cannot afford to buy it for him.
Aidan is an amazing little boy – always happy and laughing and not afraid of anything – a real little daredevil!! He goes to a mainstream school 3 days a week and a special needs school 2 days a week and has lots of friends at both. His cerebral palsy means that he cannot talk, or walk unaided but this doesn’t seem to stop him, he pushes himself every day and is now able to get about at home and in school for playtime and PE in a walking frame and uses various methods to communicate i.e. computer, picture symbols etc – he never ever gives up, he is very special and everyone that meets him and spends time with him falls in love with him.
He would benefit greatly from a new trike as apart from the fun and social side of it (I think every child loves being out on their bike) it would help with his muscle strength and coordination and stamina.
Aidan now has his very own trike thanks to Wipe Away Those Tears.
This young lady is Jessie Myers.
Jess is nearly 15, she has the label profound and multiple learning difficulties which means that she has severe complex life threatening health needs and that she needs full on 24 hour care. Her main diagnosis is Septic Optic Dysplasia. Jess also has scoliosis and is a wheelchair user. She also has life threatening cortisol deficiency and therefore needs to be managed as a constant with emergency intra musculars if the need arises. Jess was in need of a specialist profiling/height adjustable bed which we provided for her and her mum said
“just to say the biggest thank you from the bottom of my heart. We moved into our new house yesterday and the bed was delivered. It has already made such a difference to Jessie’s care without even mentioning how it’s saving the stress on my back too”.
A Swing for Oliver
Oliver is 3 years old and has a severe learning disability due to a chromosome abnormality which is unique to him. This means that Oliver can do nothing for himself and in his development is like a 3 month old baby, unable to walk, talk, sit or crawl. Oliver also has epilepsy and has been fed by a PEG tube from birth. Oliver’s mum, Angela, wrote to us telling us that Oliver loves to be outdoors and also loves to swing but a normal swing was not suitable for Oliver due to his size and muscle tone. We provided a special needs swing for Oliver and the following quote is from Oliver’s mum:
“as you can see from the attached photo the swing is up and works and is thoroughly enjoyed by Oliver every day. So once again I would like to take this opportunity to thank you and the trustees for making Oliver’s wish come true and putting a bit of happiness into every day”.
Katie Potter’s Story
This little girl with the lovely smile is Katie Potter. Katie has a rare chromosome condition which means that she is smaller than other seven year olds and has some learning delays. Katie loves going out with her family but gets very tired so needs to sit in a pushchair.
Katie needed a special needs pushchair as she was getting too big for her ordinary pushchair which was beginning to split and fall apart. We provided the Special Needs pushchair that Katie needed to spend special time out with her family.