Show your support for XYY Syndrome

XYY Syndrome awareness – 25 March 2017

Adam Blackwell

Please show your support

Adam is a part of our support network and standing up for XYY Syndrome by telling his story, which is not an easy thing to do.

Please show your support by donating towards his amazing efforts and creating awareness for XYY Syndrome.

You Can Do it Adam!

We have donated, every donation counts towards making that difference.

Please click here to make your donation

Adam’s Story

Hi, I’m Adam

I have 47 XYY syndrome with is a genetics disorder. It affects 1 in 1000 male births. Problems it may cause is learning disabilities, low muscle tone, delayed motor skills including coordination, balance etc. Many boys suffer from emotional or behavioural issues.

What i would like to do is help this charity to make a small profit from my fundraiser and hopefully make people more aware of the syndrome and how it affects different individuals.

If you would like any more information about the syndrome then please feel free to ask me or alternatively if you would like to read about it unique have an area about 47 XYY syndrome.

Please donate any money at all to this charity they help to provide information to families and people that suffer from all sorts of different genetics disorders.

You want just be helping me, you will be helping anyone that has a genetics disorder. Please share this post to help raise awareness.

 

 

Creating awareness for males born with XYY Syndrome and this is our story.

Creating awareness for males born with XYY Syndrome

 This is our story

From the age of two we started to notice our son wasn’t developing along the same lines as is generally expected for a child his age.

After many attempts to work out what was causing the delays in reaching developmental milestones, he was finally diagnosed by having a genetic blood test -XYY Syndrome was his diagnosis at the age of 4.

Due to difficulties experienced with speech and comprehension, he became increasingly frustrated at not being able to communicate his needs and wants effectively.

This therefore created problems with his ability to control his emotions and delayed his social development.

We found that encouraging him to participate in social groups, sports and community events, he gradually developed some of the skills required to effectively engage with the world around him.

Now, at the age of six he loves to socialise even if he does still require some additional support and guidance.

At the end of the day though, he is still a young boy who loves nothing more than playing and having fun!

Our son’s characteristics

Below we have listed a few characteristics our son has displayed over the years:

  • more than above average height
  • difficulty controlling emotions
  • screams a lot
  • loses self within emotions
  • emotionally immature
  • finds it hard to self soothe and regulate behaviour
  • difficulty comprehending certain questions or situations
  • task avoidance
  • muscle weakness
  • requires additional support and guidance in social situations
  • requires additional help at school
  • holds a conversation with himself
  • enjoys making animal noises
  • impulse control

 Support Networks

Over the last three years we have been working hard to find the appropriate support networks available but it has not been easy. This is when we decided to start creating awareness ourselves for XYY Syndrome and sharing our experiences.

Out of the kindness of our hearts we would like to share our story and our resources so that we may help other boys, men and families like ours.

We love our son and this is only the start of our journey.

Factsheet

http://www.healthline.com/health/xyy-syndrome#Overview1

Website

http://xyyaustralia.org/

Facebook

XYY Syndrome Australia

This is very important,

Unfortunately, and incredibly, there is no funding provided for the boys, men and families living with XYY Syndrome on a daily basis.

That is why we are sharing our story in the hope we may increase awareness and one day soon receive the recognition this disorder deserves.

Please help spread the awareness.

Warmest regards

Dave and Amber

 

 

 

 

 

What is XYY Syndrome

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Wikipedia XYY Syndrome

Unique– Understanding Chromosome Disorders

http://www.rarechromo.org/information/Chromosome_Y/XYY%20FTNW.pdf

XYY Syndrome is a genetic condition that occurs when a male’s genes have an extra Y chromosome. Females typically have two X chromosomes (XX). Males typically have one X chromosome and one Y chromosome (XY). Males with this genetic condition have an extra copy of the Y chromosome in each of their cells (XYY).

Most people have 46 chromosomes in each cell. Males with XYY syndrome have 47 because of the extra copy of the Y chromosome. However, sometimes this mutation is only present in some cells. According to the National Institutes of Health, XYY syndrome occurs in 1 out of every 1,000 boys (Genetics Home Reference).

XYY Syndrome is also sometimes called Jacob’s Syndrome, XYY Karyotype, or YY Syndrome.

Males with XYY Syndrome live typical lives for the most part. Some males with XYY Syndrome may be taller than average and face learning difficulties or speech problems. They may also grow up with minor physical differences, such as weaker muscles and bones and delayed puberty. When they are older, men with the syndrome may face fertility issues and complications related to low testosterone levels. Besides these complications, however, males with XYY syndrome do not usually have any distinguishing physical features or complications, and have normal sexual development.

Source: http://www.healthline.com/health/xyy-syndrome#Overview1

Article resources from Health Line-

XYY Syndrome