The child, yet unborn spoke to the father, "Lord how will I survive the world? I will not be like other children, my walk may be slower, my speech hard to understand, I may look different.  What is to become of me?"
The Lord replied to the child, "my precious one, do not fear, I will give you exceptional parents, they will love you because you are special, not in spite of it."
"Though your path through life will be difficult, your reward will be greater, you have been blessed with a special ability to love, and those who lives you touch will be blessed because you are special."

Meet Rhys, born on 1st February, 2007 at 8.52pm.  He weighed a healthy 7lb 13.5oz and was absolutely gorgeous, and a perfect little brother for my first son Tyler.  We were discharged home from hospital on 2nd February 2007, when Rhys was a whole day old, after being given a clean bill of health...what I didn't know was how much this would change over the next few weeks.
I began to notice strange things around the 5 week mark with Rhys. He would roll his eyes and then they would twitch or he would display what I can only describe as exaggerated startle reflex movements.  He would jump, his arms flex out to the sides and then relax again...this would repeat in clusters past the 20 mark.  He would do it at any time of day, especially when tired or when first awoken, and I just knew from already having an elder child that these movements were not normal.  I had already spoken with my GP at Rhys' 6 week check, and as I had only seen one episode at that time, we both decided that I would return if I was concerned.  I decided to do this, Rhys now being around twelve weeks old and the episodes increasing.
I telephoned the surgery one Friday afternoon in April, hoping to book in with my GP that day.  As she was only working part time I had to accept an appointment with a different doctor, who I must say I wasn't really very keen on.   I booked in and saw him on the afternoon telling him about what was happening and about what my GP had told me to do.  He went on to tell me what I was seeing was perfectly normal in a child Rhys' age and that it was a startle reflex.  I argued with him, saying he does it when there is nothing to startle him, and that they occur in clusters over 20 and that there was nothing normal about it.  This went on and on and to no avail I left on the note I was to return if I was still noticing these episodes after the age of 6 months.  Of course I had no intention of waiting this long and drove straight to A & E to be seen by a different doctor.  A different doctor that looked harassed I had visited for a second opinion, and that decided to also send me packing not listening to a word I said.  I suppose I should have expected it really, so I left in tears feeling very worried, frustrated and very un-listened to.I couldn't predict what would happen that weekend and I would never ever want to relive it.  The next night I was awoken in the early hours, I can't recall the time but it was around 3am. Tyler wanted the toilet so I turned the lights on for him and then I realised Rhys had not woken for a feed at all.  I checked his cot and he seemed to be awake but was very quiet.  I lifted him out and he was very floppy, dazed and blue looking.  I laid him on my bed and tried to figure out what was going on, was he just tired?  Or poorly?  I felt very paranoid about what the doctors had told me and instead of phoning for an ambulance I scooped Rhys up and drove to the hospital myself, foot flat to the floor in sheer panic.  I went though A & E and there was no one in sight, so I proceeded through to the nurses’ station and just passed them Rhys asking them to please help him.  They quickly put on a sats monitor and gave him oxygen and took him into resus.
I can't actually recall properly what happened next.  I know I phoned my mum to ask her to come up and phoned home to tell my partner what was going on.  The on call paediatrician was called out to deal with him and after some time we were told that Rhys had suffered an epileptic fit.  We were told that there could be many reasons for the seizure, and that they were giving him IV antibiotics now just in case it was meningitis that was the cause.  He said that Rhys would need lots of tests to decide what had happened and asked us if we had noticed any other unusual events, which of course I had.  These were discussed and we were then admitted to the children's wards high dependency cubicle.  I can't remember what order everything happened in, but we were sent for a CT scan initially and then referred for an MRI and EEG.  On the afternoon the MRI was performed, the paediatrician who we had met previous walked in with several doctors and shut the door behind him and told us to take a seat.  I knew this was going to be bad news.
We were told that the results of the MRI had shown that Rhys is suffering from a condition called Tuberous Sclerosis Complex.  Now, I was thinking what most of you probably are now...what is Tuberous Sclerosis Complex?!! Well this is when everything became clear and our little Rhys' perfect world was shattered.  Tuberous sclerosis can cause tumours to grow anywhere in the body.  Tumours, although benign, often grow in the developing brain of babies and children causing epilepsy, autism, attention problems and learning difficulties; often blighting their early childhood with severe disability.  Even those people who make it through childhood without too many problems still live each day with the threat that the tumours could be growing right now in their kidneys, lungs or other vital organs with serious and sometimes life threatening implications.  Our world fell apart.
Rhys was on the ward for just over a week.  He was started on Phenobarbital, an anti epileptic and was now under the care of the paediatrician who specialized in neurology.  He was diagnosed with having infantile spasms, a type of infant epilepsy, which has devastating consequences on development and prognosis.
Rhys is now almost 4.  He has development delay and is on par with a child the age of 22-24 months except in speech which is even further behind.   He communicates in his own "Rhysy way" and makes himself known.  He is an utter joy and I really can't express what a happy, loving little boy he is.  He really does make you realise what life is about and is such a brave little character.  He suffers from frequent seizures daily, and is also consistent with an epilepsy syndrome known as Lennox Gastaut.  He has many seizure types, including tonic clonic, tonic, myoclonic, atypical absences, atonic seizures (drop seizures), non convulsive seizures, complex partial seizures and has gone into status epilepticus many times.  Status epilepticus is defined as 30 minutes or more of continuous seizure activity and can lead to brain damage or even death if not controlled quickly.  Rhys has also aspirated when seizing which has lead to pneumonia.  He is a frequent visitor on our local children's ward, and is now awaiting to see a neurosurgeon to have a vagal nerve stimulator fitted in an attempt to reduce his seizures.  Rhys has also undergone tests for brain surgery, but is not a candidate due to his seizures being generalised.
Rhys also suffers with behaviour problems and as a result can be seen as "just a naughty child".  This couldn't be further from the truth.  His understanding level makes it very difficult to be able to make Rhys understand what he is doing is wrong; hence he will repeat the "naughty" behaviour.  Although, we do know he is quite aware of how to "push our buttons" with some of his behaviour which does add to his Rhys character!!
So, all this for one little 4 year old.  All because of Tuberous Sclerosis Complex.   This genetic condition can affect anyone and often comes as a bolt from the blue.  70% of babies born with Tuberous Sclerosis are born with no medical history of the disease, just like Rhys.  Rhys is one a thousands who will have a similar story but the uncertainty surrounding TSC is a big question mark.  What is certain is there is no cure.  What is certain is no one will know what will happen next, as no-one can tell how tuberous sclerosis is going to affect each individual.  The future is uncertain and the prospect of the devastation it could bring to lives is alarming.      So, we have begun 2011 and I want to do something for my Rhys. I want to do something that will raise money and awareness of the cruel disease that has deprived my boy of the life he deserves.  I want to raise money for the Tuberous Sclerosis Association, who works to provide support for today and hope for tomorrow for people affected by Tuberous Sclerosis.
The medical breakthroughs in understanding how Tuberous Sclerosis works, including the discovery of the genes that cause it, have also brought hope to suffers from many other diseases, including cancer.  They are now closer than ever before to the Holy Grail - a treatment which attacks Tuberous Sclerosis tumours.  Clinical trials into the first ever potential treatment for Tuberous Sclerosis are already underway.  Support is needed now so these life-saving trials can continue.
I am committing myself to do a parachute jump, purely to raise money for this worthy cause. I don't like heights....but the bravery my son has shown me over the past four years is incentive enough to do anything for him.  The scary situations he has been in turns my stomach and I am hoping that I can raise enough money to make a difference.  Please be as generous as you can, it is very much appreciated.
Rhys may have Tuberous Sclerosis, but Tuberous Sclerosis doesn't have my Rhys.  Every day is a question mark, but with Rhys everyday is also a smile.  He has taught me patience and to rejoice in small gains others take for granted.  He has taught me tolerance to accept that his perspective is different and deserves respect.  He has taught me courage to fight for him when no one else will and endurance to go on when I feel I can't anymore.  He has taught me humility when I can’t make things better but can only just be there for him.  He has taught me to love at a deeper level than i ever thought possible.  Rhys has taught me so many things an adult couldn’t; now it's time for me to give a little back to him.