Some of the special children we helped in 2012
This happy face belongs to Edward Neale trying out his new Trike, I think he likes it!!! Edward was born prematurely and at 15 months old was diagnosed with Cerebral Palsy. Despite all the setbacks Edward is a very determined little boy who does not see himself as any different from other children despite struggling with so many things.
This is part of the request we received from Edward’s mum:
“There is one thing, despite constant trying, Edward has not been able to do- ride a bike. He cannot turn the pedals with his feet and balancing is too difficult. Up until recently Edward would often be pushed round to the park on a trike, which he has had since being a baby, (he is now far too big for it!) We then bought a second hand bike but despite using stabilisers and pulling him using a strap Edward has fallen off countless times and is now reluctant to get on it. As he is so active and does not let his disability stop him this is one area that he misses out on. We would dearly love to see him ride his own bike round to the park but recognise that he needs a special bike. A chance encounter at Castle Park (Colchester) where I spotted a little girl riding a specialist trike led to me seeing Edward ride a bike for the first time. The father of the little girl offered Edward the chance to ride the trike. I cannot tell you what this moment meant to me. I had tears in my eyes seeing him ride a bike for the first time.
As a parent of a child that has had to fight to learn each new motor movement, every new skill is treasured and captured as a lasting memory- the first smile, the first time he crawled, pulling to stand, walking, jumping, riding a bike. I can remember where we were and when they occurred as they are so special. As a result of this chance meeting a session was organised by Edward’s physiotherapist to try a Tomcat trike- which he took to straight away. His delight and happiness at being able to ride around the room with very little help was clear to see (see attached photo). As I’m sure you have guessed, I am writing to ask if you would consider helping us with our aim of providing Edward with a trike which he could ride. This fantastic bike, with so many features could enable Edward much more freedom than he currently has. However, the cost is just too much at this time in our lives (we have just had another baby- who Edward adores).
We have now provided Edward with his very own Trike and have received this lovely Thank you from his mum:
Dear Gail and everyone at Wipe Away Those Tears, Today Edward received the trike that you so kindly agreed to fund and we are e-mailing to express our eternal gratitude. At just after 3pm, Dave from Ashfield’s Special Needs arrived with a beautiful, black Tomcat trike for Edward which Edward could not wait to get on. After Dave took Edward up and down the road using the carers handle, he made a few adjustments and the trike was ready. I then walked with Edward round to our local park (using the carers handle) and once there he rode independently round. His face was an absolute picture. The delight on his face and the laughter as he rode round was wonderful. This is a very new experience of independence that Edward has never had before and today will always be remembered as one of the most happiest. I will always cherish it. We would never have been able to afford a trike for Edward so we are truly grateful to you for funding it- thank you so much.
This young lady is 14 year old Paige Carpenter and her mum wrote to us tell us that just 2 years ago the family were called to the hospital to say their goodbyes to Paige as she was so poorly. Paige had previously not been expected to make it past baby stage as she had suffered a major lack of oxygen at birth.
For most of the first 10 years of her life Paige was on oxygen, Peg fed and on large doses of epilepsy medication. When she was 10 her treatment was drastically changed, Paige was fed by mouth and taken off of the oxygen. Some 2 years later she is trying to talk and has not been on oxygen anymore. A quote from her mum reads as follows:
“Paige loves her food, she uses an I pad and loves life. We were assigned a new physio who suggested trying a trike, I had never imagined Paige would be alive now let alone on a trike”.
Paige now has her very own trike which she loves.
After being born at just 29 weeks and spending his first 10 weeks in hospital, at 2 years of age Freddy was diagnosed with Cerebral Palsy which affects both upper and lower limbs. Freddy is unable to walk or stand unaided.
Freddy’s mum wrote telling us that they were in desperate need of a new specialised pushchair, as Freddy is unable to walk. Freddy goes everywhere in his pushchair and had outgrown the one which was being used. We provided Freddy with a new “Baby Jogger City Elite” pushchair and his mum told us:
“Freddy’s new pushchair came today and I can’t tell you how pleased I am with it! It’s so much bigger that Freddy’s old pushchair and it’s amazing. We could never thank you enough!”
Freddy looks so comfortable in his new transport!!!
Reece and his twin brother Marcus were born prematurely at 27 weeks. Sadly Marcus lost his fight for life after 12 days. Reece continued to fight for his life and grew stronger and was eventually allowed home at 8 weeks. At 17 months old Reece was diagnosed with Spastic Diplegia, a form of Cerebral Palsy.
Reece has undergone lots of treatment to relieve the spasticity in his legs, in the hope that he might, one day, walk aided or unaided. The whole family have been through a very traumatic time and needed a well earned holiday where they could relax and spend quality time with Reece. WATT provided a special holiday for Reece and his Mum & Dad and this is the Thank you we received from Reece’s mum:
I just wanted to let you know what a fantastic holiday we had. It did the whole family the world of good. Reece loved it, especially having the swim up room, he spent a minimum of 5 hours in the pool every day, this was incredible physio for him. He was able to walk 16 steps unaided in the pool, this was amazing to see as he has only done 3 steps before. He was swimming a couple of feet unaided and loved being helped to dive to the bottom of the pool. Reece went on holiday a little boy but came back a big boy. His confidence has soared which is lovely, he was copying all the dance moves and enjoying every minute of the children’s disco in the evenings. We cannot thank you enough for giving us this holiday, or explain fully the benefits we all feel having been away.
The pretty little lady making the cakes is Maya Sykes who is 3 years old. Maya has a condition known as Ehlers-Danlos Syndrome which means she has constant sublaxtions in her knees, terrible balance, pains in her back, knees, stomach, fingers and ankles and vision and gastro problems. Maya’s mum told us that her aim is to make Maya as comfortable as possible when she is at home. She was in need of a good quality memory foam mattress topper and a greatly padded car seat, both of which would help Maya be far more comfortable when in bed or when out in the car with her family.
Maya was also in need of a safer chair in order for her to sit at the table and also a disability pushchair.
We are pleased to say that Wipe Away Those Tears have provided Maya with all her requirements and hope that she will now be pain free when sleeping, riding, eating (and making cakes)!!!
This beautiful baby is Liam who has a Chromosome Abnormality. This affects Liam’s mental and physical development and he is also tube fed and has hearing loss in both ears.
Liam’s mum wrote to us telling us that both Liam and herself were in need of a specialised cot for Liam, however, the cot was custom made in Germany and very expensive. After looking at all the benefits of the cot Wipe Away Those Tears agreed to help with the funding.
We have been told that the cot will probably last Liam until he is about 12 years old, at which time his mum told us that she will donate it to another child in need.
Keeley Barrett in her Power Wheelchair provided by WATT
This is the letter we received from Keeley’s mum telling us about her lovely daughter:
We are writing to you as we have a Daughter (Keeley) who has a lifelong medical condition, called Congenital Myasthenic Syndrome (CMS). CMS is a condition that causes severe muscle weakness and we are struggling getting Keeley to and from School at the moment, using a manually operated wheelchair. Keeley is nearing the end of her first year at secondary School (year 7) and would really benefit we feel from having a power chair rather than a manual wheelchair, as due to her condition she cannot manually operate the wheels of her current chair.
We would very much appreciate it if you would kindly consider Keeley for funding for a power wheelchair. If Keeley was lucky enough to be able to be granted a Power Wheelchair, we are really sure that it would really light up her face, as she wants to be more independent and this would not only help her getting to/from School but also be a great help on forthcoming School trips and enable her to feel more able & comfortable in social gatherings with her friends. It is with this particular difficulty that we are writing to you wondering if it would be possible please for you to consider funding for Keeley to obtain an Electric Power Wheelchair.
To make matters worse, a recent application for ‘Home to School’ transport was declined by Essex County Council, as Keeley is not on the Higher rate mobility element of DLA. We did appeal on exceptional grounds, providing letters of support from her specialist Doctor at GOSH (Great Ormond Street), her local Paediatrician and Physiotherapist at Colchester General Hospital to name a few, but sadly to no avail. We are in such a situation, that as things stand we do not know how we are going to cope with another year of struggling to get Keeley to and from School.
Stanley is 2 years old and suffers from epilepsy and development problems. Stanley’s mum wrote in to tell us that the pushchair she was using for Stanley was completely unsuitable as it gave him no support. Stanley needed a specialist pushchair.
We have provided the “Magic Pushchair” and received the following thanks from Stanley’s parents:
We would like to say a huge thank you for purchasing our son Stanley’s special pushchair. Since we received it he has been able to sit up the table with the family when eating out, joined in at a birthday party with the other children and his reflux has been much better since sitting upright in it. Stanley has also been able to see the animals clearly when we visited Colchester zoo.
We just can’t thank you enough for your kind generosity.
Please see enclosed photo of our happy little boy
A letter from Katie’s mum:
When Katie was 18 months old she was diagnosed with a condition called Neurofibromatosis Type 1. NF1 is a genetic disorder which affects her nervous system and behaviour, she has attention span difficulties and her body has produced small tumours under her skin.
Because she has small tumours all over her she requires regular MRI scans. Katie had a scan when she was 4 and a larger tumour was discovered on her optic nerve, at the chasm where the nerves cross. It wasn’t affecting her sight or causing bulging to her eye socket so the consultant thought it would be better to monitor it and Katie continued to have her annual MRI’s.
In June of 2011, Katie was having an MRI scan at GOSH. This was to be her last scan as the tumour had not changed in 7 years. The results of this scan revealed a second larger tumour growing in her neck, in her spinal cord. It is a rapid growing tumour which if left would render Katie paralysed from the neck down. This tumour was not operable due to its position, nor could it be treated with radiotherapy due to the high risk of strokes. Katie started chemotherapy.
The protocol was for 18 months of chemo using a combination of 2 different drugs. This has been very tough for Katie, not only coping with hair loss, not being able to attend much school and she also lost over 16lb in weight and had to have a gastrostomy, a tube in her tummy where she has a night feed pumped into her to build her strength up. Katie is 10 now and is at week 43 out of 81 weeks of chemo.
The long stays in hospital can be very boring for Katie together with the lack of school, she can feel very isolated. Katie is over the moon that Wipe Away Those Tears is providing her with an Ipad. This means she can keep herself occupied and do school work when she isn’t well enough to attend. As Katie’s mum I am also so grateful to wipe away those tears. I haven’t seen a smile on her face this big for a long time.