Elijah Version 2

FACTS ABOUT ME !

I was born on the 7th of February 2004.

I was diagnosed with Angelman Syndrome in April 2006. I am deletion + I live in Christchurch with My Mum and Dad Julie and Darren Humphries. You can contact them by phone 03 387 0036 or by email [email protected] My Blog is http://elijah-angelstory.blogspot.com/

Speech Therapist and have a carer who regularly comes to look after me I have weekly swimming (hydrotherapy) and Mini swim in Christchurch www.miniswim.co.nz I attend the Lake Terrace Preschool twice a week with my Support Worker.

HI I’m

ELIJAH

My Parents know of about another 10 children in Christchurch with Angelman Syndrome. I may not talk - but I’ve got plenty to say

I have a wonderful older sister Francesca who likes to give me piggy backs I can crawl very very quickly and can pull myself up to stand, and surf the furniture. I love to climb and do headstands I love to pull my pants and nappy off!! And escape my pyjamas I am quite a ‘houdini” I eat bread by the ton and I am a big drinker! My favourite fruit are bananas, but any fruit will do. I have an Early Intervention Team of our Family Doctor Paediatric Neurologist, Physiotherapist, Early Intervention Teacher,

Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.” The Bible - Matthew 19:14

I have Angelman Syndrome Thanks for taking the time to learn more about me March 2007

WHAT IS ANGELMAN SYNDROME ? Angelman syndrome is rare non-degenerative neurological disorder. I have a deletion in my chromosome 15 that affects parts of my brain particularly associated with language and movement. You can find more detailed information on the Angelman Syndrome Foundation website www.angelman.org or www.angelmanforum.org The form of Angelman Syndrome I have, is nonhereditary from my family. It was not anyone or anything’s fault.

FACTS ABOUT ANGELMAN SYNDROME ? There are many characteristics of Angelman Syndrome….some of the common ones that I share are: Happy, smiling demeanor; easily excitable personality Developmental Delay (but no loss of skills) Speech Impairment (non-verbal or minimal use of words) Movement or balance disorder usually ataxia of gait Hyperactivity, short attention span Excessive chewing/mouthing behaviour Seizures, abnormal EEG

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WHAT YOU CAN DO FOR ME

I need you to treat and respect me as you would any other person. You can help me b y b e i n g compassionate, loving, caring, and understanding as I am trying to reach my full potential.

WHAT MY FAMILY SAYS ? “He can’t not talk he’s a Humphries” Julie “Did I go to Angelman Syndrome too when I was small? “ - Francesca “God’s miracle is upon Elijah every day” Julie. “Elijah will fulfill the plan and purpose that the Lord has for his life” - Darren

Although I may not show it, I also understand almost everything you say to me. My parents will be glad to answer any questions about me.

REMEMBER I am still a little boy who enjoys the same things as most other little boys. These are things in particular that I like: 1 1 1 1 1 1 1

Hugs, smiles and words from you Food and lots of it ! Playing with noisy toys and balls Swimming Watching TV Listening to Music Climbing climbing climbing

Francesca and me