Meet Sam
Sam was diagnosed with Angelman Syndrome (AS) at the age of 2. AS is not a disease, it is a neurological disorder that causes severe learning difficulties, and although those affected have a normal life expectancy, they will require looking after throughout their lives.
Now at 8 years old, Sam is the most special member of our family. Sam cannot walk and relys on a special wheel chair for his mum and dad to get him around. He also has a special bed that raises up, a bit like a hospital bed, which helps with lifting him to his chair.
Sam loves to laugh at his Sister, Leila and his cousins Heather and Zac playing around him, sneaking up behind his chair and jumping out in front of him. His most favourite thing is tickles!!! Especially from his Great Granny.
Recently on a day out with the family Sam, Leila and Heather were in the back of the car. Sam likes to reach out to people near him and pull their hair or just say hello and when his cousin was trying to avoid getting her hair pulled Sam’s 4 year old sister said to her older cousin “don’t worry Heather, Sammy touches you so he can talk to you though your dreams”
Sam loves going to the fair – rollercoaster’s, flying swings, and, much to his father’s dislike, the spinning teacups.
Sam loves going swimming and finds it easier to move when he is in the water. Swimming is a great therapy for many people with disabilities and injuries, although Sam really doesn’t live being splashed in the face – nor does he like windy days for the same reason.
Sam likes to have your full attention when he is being fed and does not like much to share his food with his dad! Steak Pie with Mashed Potato and Lasagne are his most favourite meals. Sam also loves to have an ice cream cone, Raspberry Ripple!!! HMMMM
Sams favorite toys are ones that play music and spin round and light up. Due to his condition Sam suffers with tremulous movement of his limbs he can sometimes accidentally hurt himself whilst playing with his toys but all he will need is a cuddle and he will soon be back to his old self.
On Sam’s birthday he awaits the phone calls from his Granny and Papa, and Aunts and Uncles who all sing Happy Birthday to him to which he will laugh away at.
Sam loves taking part in his school shows and even dressed up as Santa Sam one Christmas.
Sam is a particularly sociable little boy and loves to have all his family around him. In 2007 we all met in Newcastle for Gran and Papa’s 40th Wedding Anniversary. Sam is always the centre of attention. Longs walks in the park with everyone playing hide and seek and having fun. Sam had a great time, especially watching his mum and dad trying to climb the Monkey Bars!! Like any other young boy his parents do do the silliest things!!
Whenever we visit Sam and his family in Essex we all love to go to Maldon. Not only does it have a funfair where same loves to go on the swings and mini roller coaster but it also has a small water park where he like to reach out to the fountains of water that spurt up from the ground.
When Sam and his family come up to Scotland to visit us all he loves to go to Largs and Lomond Shores where he can enjoy the amusements and gets to go on his favorite rides.
As they say – Nothing with AS is certain, all we can do is love Sam for who he is and that is all he needs to love you back. Sam like nothing more than a cuddle, any time of the day, just to know you are there. Making Sam smiles makes us all smile.
Sam and his Mum and Dad have had a lot to get their head around since his diagnosis and have found the charity ASSERT (Angleman Syndrome Support Education and Research Trust) a great support in both information and in attending their annual Conferences allowing them to meet with other families in the same situation.
100% of the money raised at this event will go directly to ASSERT to contribute to their ongoing work and support of families in the UK affected by AS.