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This is our lovely little boy Adam who is just 6 years old

At only 3 weeks old Adam started having seizures and stopped breathing, he was rushed to hospital placed on seizure medication and antibiotics (they thought Adam had meningitis). We were told he had a virus and was kept in a High Dependency Unit in our local hospital for a week still and kept on seizure medication for a little while.

From then on we realised Adam was slipping behind all of his milestones but we did not know why. He was slow to crawl and very late walking, we were told he might never walk because of his apparent low muscle tone which made me just work harder with Adam to prove the medical profession wrong. Adam was then diagnosed with deafness and prescribed hearing aids.

At 2 ? years old the seizures came back and Adam regressed. He lost the few words he had mastered and did not wish to interact with anyone, slowly withdrawing from us all. Eye contact was lost and some really challenging behaviours emerged. Adam had no way to communicate except by yelping and screaming to get attention. This was our lowest point we wanted to help Adam but he saw everything we did as a demand and it sent him into a frenzy. We hardly ever left the house.

At 3 years old we approached an Autism consultant and Adam was diagnosed with secondary Autism? We needed this diagnosis to secure a home education program and using a behavioural analyst we trained a team of 4 therapists to teach Adam to communicate, (we use special augmentative devices), based on Adams motivation to request items he loves and rewarding him. We worked on Adams physiotherapy and occupational therapy targets at home and introduced swimming and horse riding.

All was going well until Adams sleep needs increased and increased, he was needing 18 to 20 hours sleep per day. We kept being told it was due to Adams low muscle tone as moving about required much more energy. We kept data and wrote to every Dr who had ever treated Adam. He stopped eating and after much nagging was taken into hospital for tests…, we were told ‘don’t worry we can always put a tube in to feed Adam if it should get worse’ ...We persevered and turned this around by pairing up eating with something Adam loved (TV) and eventually he started to drink goats milk and then got the strength to eat a little more and a little more each day (Eating to date is great but it has been a long struggle). But Adam still needed huge amounts of sleep.

A sleep study was at last performed and from this we got a referral to Great Ormond Street were Adam has been diagnosed with Central sleep Apnoea, he stops breathing during sleep and his brain doesn’t kick in to tell him to breath again. His oxygen saturations go as low as 51% He has also just had a 24 hour EEG and they have found that Adam has clinical and sub-clinical seizures throughout his sleep. During one of the seizures Adam stopped breathing so they will be doing a combined sleep study and EEG very soon to investigate how often this occurs.

At Christmas time we received a diagnosis at last, it came out of the blue and was a huge shock. Adam has a very rare Chromosome disorder. It is called Idic 15 but is rare in the fact that Adam has four extra copies instead of two and that it is in a mosaic form meaning it is not in every cell (which is why it took so long to diagnose). Adam is the 7th child in the world to be diagnosed with this disorder.

Looking now at this diagnosis it covers every one of Adams symptoms (We have included a leaflet on the disorder). What is most worrying is that there have been cases of sudden death with this disorder possibly linked to seizure activity and sleep apnoea which we know Adam has.

We have attached the physicians advisory about sudden death in children like Adam (this really makes us try to pack as much into Adams life as possible and give him the best chances to enjoy as many experiences as we can)

So whilst we are waiting for the Doctors to get their act together we decided to embark on The Scotson Therapy at the Advance Centre in East Grinstead. We learn exercises to increase the blood flow around Adams diaphragm thus encouraging the oxygenation of the undeveloped muscles that support Adams diaphragm. He also has Hyperbaric Oxygen therapy each time we go and the difference is amazing. Adam is so much calmer, his posture is better, he is learning and making decisions, he is developing a cheeky sense of humour and his energy levels are increasing and so is his enjoyment of life. We visit 3 times a year when the exercises are changed according to Adams progress. However we have now run out of funding. Because we run a home program and only part of it is covered by our Local Education Authority we are already subsidising this with our own money. Steve, my husband, is self employed and works away but has had to stay home a lot because of hospital appointments for Adam, (and myself as I sadly have a chronic illness).

This is a new character-portrait for the Exellarian character, Michaela Hedone, since the old one was very innaccurate. I think I may have broken my own rule about making female characters though, even if it was the point... Heh.

Character Profile:

Name: Michaela
Hair color: Dark Brown
Eye color: Hazel
Gender: Female
Species: Human
Nationality: Valkryan
Born: February 13, 606 PI, Alectronapolis, Valkrya

Codename: Hedone
Squad Role: Assassination Specialist and Ranged Support
Weapon(s): Heavily-Customized Carbine, Customized Submachine Gun, “Fire-Claw” Streaker Punch Daggers
Preferred Vehicle: "Laelaps" Light Recon Bike

Biography:


Personality: Never could such a more perfect young woman be found, so they say... Michaela Hedone is probably, the most popular and attractive trainee currently in the Aresgen II program... possibly even the world, some infatuated peers might rumor. The first thing most would notice, is that Michaela is un-doubtfully attractive to any and all Human eyes. With her perfect balance of muscle, height, shapely outline, and obvious charismatic charm, why wouldn't she be? But almost immediately, one would judge that Hedone is just another pretty face... Not so different from the most famous of runway models or (Perhaps more accurately) adult-film actresses. All who say this are wrong, however... And any who question this are soon taught the hard way by Michaela herself. When in a fight, the young woman is among the most lethal forces any soldier could ever encounter. Michaela is especially talented in the art of assassination, and will not hesitate to get her hands dirty or fight that way as well.
Being as charming and beautiful as she is, many have been enticed by her extraordinary allure, and Hedone has constantly used this to her advantage. Indeed, Michaela is regarded as cold and calculating by many when they learn of her use of seduction to get anything her twisted heart desires; It has been said that Michaela used this 'talent' of hers to somehow get marked the highest in her assassination base of Falling Crimson, or it could just be that she really is that adept at her trade and is rightly earned (Unless the starters of the rumor beg to differ, in which case they probably won't live to see the morning). Many males have dealt first hand with her talent's potential, and usually tell that it doesn't end well for them. One would think that people would know not to fall for her dark schemes and deceit, but it is almost impossible not to, so refined is her skill. Even when she doesn't need anything in particular, Michaela still performs this devilish act simply out of habit, and many speculate that she simply enjoys toying with people's emotions, or that she could actually be addicted to doing so...
Obviously, a person such as Micha would have many enemies as a result of constantly lying and seducing people against their will. Indeed, she seems to have many - such as the famous Madelyn Arete, but one in particular stands outs: Nikki Atalanta. The two were actually good friends for much of their lives, until a heated rivalry emerged between the both of them during puberty, where Hedone physically developed much faster than the former, and Michaela immediately put her assets to good use... much to disagreement of Nicole. Now, there exists a competition between the both of them ranging from training exercises, to boys... And none of them seem too ready to lose just yet.
So, like many who meet Michaela Hedone predict, Micha is just some toy to be played with until it demands its pay (In which case you're pretty much screwed)... And none suspect that beyond that cold, attractive exterior of deceit and anguish there actually exists a person... doing what she can to survive the cruel realm she lives in the only way she knows how to, and that there may exist sadness and grief beneath that shell. But as all who believe to Michaela say, "It's not possible. She has no heart, whatsoever..."