Lewis

Lewis was born on the 28th February 2004 and everything went really
well. Lewis grew and developed normally, although he started sitting
up a little late at around 7 months and started walking properly a
little late at around 17 months. At around 6 months Lewis started
having Reflex Anoxic Seizures - he would hold his breath until he
turned blue and passed out - he didnt do it on purpose, it was an
automatic reflex caused by an oversensitive nerve in his brain. He
grew out of these when he was 3. By the time Lew was 2 he was walking
and doing everything else absolutely fine, just like your average 2
year old.

Not long after his 2nd birthday he started to limp on his right leg.
This was diagnosed as irritable hip. After around 8 weeks he was able
to walk again normally. Mid April 2006 he stopped walking completely
and would only crawl. In May 2006 we saw a specialist and Lewis
started on physiotherapy and a whole bunch of tests. In July 2006
Lewis had his first epileptic seizure. In August 2006 he had an MRI.
In September he had a second epileptic seizure. Whilst we were in
hospital for this second time, Lewis had ECG and EEG and several blood
tests. His EEG came back with slight background abnormality.

In October 2006 Lewis started to have reasonably regular epileptic
seizures (every few weeks) and was put on a treatment programme. From
around September 2006 Lewis' condition worsened considerably and he
became unable to sit up unaided.

By November 2006 he could not sit or even support his own head and
physically all he can now do is lie on the floor. In November 2006
Lewis went into hospital for a lumbar puncture and tissue and muscle
biopsies as the doctors have still not been able to diagnose the
condition Lewis has that has caused his physical condition to
deteriorate. In December 2006 he completely lost the use of both his
hands and he also stopped being able to use his mouth to eat. His
attempts at speech were by now almost non-existent and in January 2007
he stopped being able to blow kisses which he used to love to do. In
January 2007 he was fitted with a nasal gastric tube for feeding and
medication and in July 2007 this was changed to a gastrostomy - a tube
directly into Lewis' stomach through his skin, just under his ribs.
Lewis' eyesight and hearing are absolutely fine and his mental
understanding remains un-damaged. He communicates with his eyes, and
he can make choices by using eye-pointing.

Lewis is an incredibly happy chap, despite all his problems and he
loves to spend time with the other children and interact with them as
much as possible. Even though Lewis can't speak or move, his
intelligence is normal for his age and he is a very cheeky and
incredibly lovable young man whom we adore!

We have had an incredible journey over the past 2 years. Lewis
is now 4 and his condition has not changed, which in its own
way is good as he has not got worse.

Lewis has had almost every single test that is available and all of
these have come back completely normal. At the moment there arent any
other tests that can be done, so we get on with our day to day life
and make the most of every single second that we have with Lew as
nobody knows what his future holds. We live life to the full, squeeze
as much fun into it as we can, but at the same time try to keep some
normality for our own sanity and of course for Lew's benefit. He
started school in January this year and he absolutely loves it! There
was a time when I could not even contemplate him going to school - we
have spent almost every minute together since he got very very ill in
October 2006 and so to have him away from me for 5 hours twice a week
is a big step for us!

Lewis has been in several newspapers and also on the local TV news.
He won a bravery award at the Best Wellchild Childrens Health Awards
2007 and got to meet Prince Harry! Some people with children who have
terminal of life threatening conditions do like to keep them private.
Our hope is that by making Lewis' condition public, that someday
someone will come up with the miracle we need to bring our gorgeous
little boy's body back to life again.

Last year we set up a Fund to raise money to buy Lewis the very
expensive specialist equipment he needs to make his life as normal and
comfortable as possible. The Fund has been so successful that we are
now able to help other children in our local area and in the UK who
have similar undiagnosed, life limiting and life threatening
conditions, by purchasing or helping towards the purchase of the
essential equipment our very special children need, not only for their
physical and mental wellbeing, but also to help to include them in
play activities with their able-bodied peers and to stimulate the
senses and abilities they do have.

Lewis will be in YOU magazine (Mail on Sunday) on Sunday 27th April 2008 as part of the publicity for the Wellchild Awards for 2008.

I dont really know what to say, it must have been devastating for you for things to happen to lewis so fast but i know you probably thank your lucky stars hes still here today even though he doesnt have full use of his body he is an amazing little boy and hopefully one day you will find the diagnosis you want to have your little boy back fully and i want to say that your a great credit to those you have funded for and for yourself i wish you all the best i really do, it makes me stop and think how lucky i am that rileys erbs palsy has not paralysed him fully as it could of next time i tell him not to do something or sit still ill think again its such small things like that we take for granted big hugs to you xx

Hey. You will know as well as anyone, that no matter what is wrong with our children at any point in their lives, it is the most awful thing, but that we manage, we cope, we get through it, we move onto the next minute, hour, day, week, month, year.

Also, there is almost always someone worse off than oneself. At the moment we are keeping updated on a little girl who was 5 last month and who probably has just days to live as she has neuroblastoma which has taken over her entire body and her family have been told there is no treatment left available to her. That is what is hurting me inside at the moment.

But one thing I always to say to people is that somehow we all manage, because we are mums! Its hard, its stressful, its an emotional rollercoaster, but we do it cos mums are brilliant! (And we havent got much choice given the alternatives!).

How rightly said Sam

Sorry to hear about the little girl how heartbreaking

How heatbreaking im sorry to hear about that, my cousins son had neuroblastoma when he was a baby he was diagnosed at 3 weeks old he had a huge swelling on his neck and thats what it turned out to be luckily tho it didnt spread and he responded really well to chemo, hes 5 in december so if hes all clear by then he will be fully in remision it was awfull when we first found out as riley was only 4 mnths old i couldnt stop crying, it really is a killer tho hopefully fingers crossed it never comes back again as they have been told if it does there more chance that it will be untreatable.