Hi. My name is Aimee Spiers and i am the mum of a very special little boy called Charlie.
Here is his story..........
I had my first scan at 12 weeks it showed that there was an increased risk of Charlie having down syndrome because the nuchal fluid on the back of his neck was increased. This was a very stressful
time for both me and Edd as we had to wait for a further scan at 20 weeks to see what the outcome was.
It seemed like a lifetime for us to wait not knowing but eventually the 8 weeks passed and it was time for the scan, it was a very nervous time for us but the scan showed that everything looked normal. A special scan of Charlie’s heart was also done because I have type 1 diabetes so there was an increased risk of him having a heart defect but everything was fine.
The day finally arrived and Charlie was born on the 27th September 2009 weighing 6lb 14oz. It was the happiest day of our lives. All the stress of the pregnancy was worth it because we had a beautiful little baby boy.
Charlie seemed to be developing well, he sat up
unassisted at 6 months and was a very happy smiley baby boy.
When Charlie reached 10 months we suspected something
was not quite right, he was quite happy sitting but would not roll on to his front, couldn’t crawl not through the want of trying and just looked very stiff in his movements, then over night Charlie just stopped weight bearing, refusing to put any weight on his legs at all. Our concerns grew, we asked for some advice from our health visitor and we were told not to worry until he was a year.
At 11 and ½ months we took Charlie to the G.P and was referred to a paediatrician who told us that further tests needed to be carried out. Charlie had an extensive range of bloods, an MRI scan and an EMG scan.
Our worst fears were confirmed when Charlie was diagnosed with an incurable condition called spinal muscular atrophy type II which is a neuromuscular condition causing weakness of the muscles. He can only sit, he cannot crawl, kneel, stand, walk or sit up from a lying down position.
Charlie also has trouble going to the toilet, it got to the point where he would cry passing stools even though the stools came out soft he would still have trouble going because of the lack of mobility and underlying muscle weakness. Charlie now has lactulose twice a day and has suppositories once a day to help him but it is still a daily struggle for him.
Charlie also has trouble swallowing sometimes, his food has to be of a soft consistency and he struggles to eat certain foods. It takes a very long time to feed him and he sick on a regular basis.
Facts about Spinal Muscular Atrophy
People with SMA type II show generalised weakness and wasting of the muscles.
Despite a set pattern of weakness, each person is different in the extent to which they
are affected. These children are able to sit unsupported but cannot stand or walk. There
is often susceptibility to respiratory infections, but the danger from these depends
on the extent to which the respiratory muscles are affected. Bouts of infection may
be associated with further apparent weakening Scoliosis (curvature of the spine)
and deformities of the hands, feet and chest develop in childhood and joints may be affected by tendon contractures which reduce movement of the limbs.
Charlie is such an amazing little man he has always got a smile on his face,
he is very cheeky and very vocal he amazes us everyday when he comes out
with a new word, he knows exactly what he wants, he is very intelligent and he
deserves to have the best life that we can possibly give him. So follow us on our continuous journey to make this possible for him.
Charlie is now 2 and a half and is looking forward to going to nursery in September in his power chair.
Charlie now has a few more pieces of equipment that have been provided by the NHS. He has a special potty seat, he has a special shower chair, he now wears a spinal jacket to try and prolong the onset of scoliosis, a profiling bed and a table with a cut out to enable Charlie to support his elbows when playing. A sleeping system has been provided to enable Charlie to keep in the right position whilst sleeping but it is not the one of our choice as the one we want costs too much money, so this will be another piece of equipment we would also like to raise money for.
Charlie is also going to need orthopaedic surgery on his hips in the near future, but is doing extremely well and we are so proud of him, he is such a happy little boy and we are blessed to have him, and the support we have had so far has been overwhelming.
It's been nearly 4 years.....
Apologies first and foremost, it has been a long time since we have updated the website and a lot has happened in that time.
Charlie has now got a little sister, Dolly who is two years old and loves Charlie very much. Despite her young age she is very much aware of Charlie's condition and does her very best to help him in any way she can. Charlie also loves her too and is very protective over her.
Charlie is now in year one at Crofton Infant school in Petts Wood and is enjoying it more and more every day. He is doing very well at school and his favourite subject is English. He has a great group of friends and they do everything they can to make him feel part of the class.
Charlie's school has been fantastic in accommodating his condition and his transition into school was very smooth. He has a hygiene room there and a ceiling track hoist and his ISA has been throughly trained in how to handle and support him. Without them we would have been lost. He has been able to join in with Sports day and day trips out. The school has done everything possible to make him feel valued, liked and respected.
Charlie has so many interests outside of school. He loves his Super heroes. Batman being his favourite. He was able with Make A Wish Charity to spend the day with Batman. He drove around with him in the 1960s Batmobile and had afternoon tea with him. Fortunately the fascination with fans has now gone. Now it is weapons- guns, swords, knives, light Sabres etc. Many a weekend morning or even after school have we had pretend fights where we do our best to die convincing and interesting deaths.
Charlie's hospital and specialist appointments have increased in the last few years. Not many a week passes when Aimee doesn't have to go St Thomas' Hospital to see the SMA specialist, or appointments with the physio, orthotics, occupational therapist, speech and language therapist, various support team meetings or even when the wheelchair needs servicing. Charlie has also been having sleep study's once a year at the Royal Brompton Hospital to montitor his breathing and sleep patterns. We have been given a nebuliser and a cough assist machine which we keep at home to help fight chest infections which unfortunately with Charlie's condition is a regular occurrence .
Charlie also has hydrotherapy every week which he loves and attends play therapy sessions every week to help with his anxieties.
We are also waiting for the delivery and fitting of a mobile arm support which will help Charlie to feed himself amongst other things
The time has now come for Charlie to replace his Powerchair. His current chair has been fantastic these last five years. The smallest thing in life that we take for granted that is such a hardship for Charlie has been helped by the use of his Snap Dragon powerchair or as Charlie like to call it - Snappie. It has enabled him to take part in day to day activities, join in with his friends, eat at the table, play at the table. In shorting has enriched his and our lives. It is the best powerchair available on the market today for his condition, and both Charlie and ourselves believe that this chair is the best for to continue with.
So we are now fundraising again to make this possible for him.