I can because I am Jamal

Jamal’s recent achievement in his swimming will see him compete at the 2021 Special Olympics Junior National Games in Tasmania.

Sitting in front of my laptop screen talking to Jamal about his recent swimming achievements, over Zoom, we were both sighing with disappointment that camp was cancelled this year.  Jamal was very aware and respectful of the Prime minister of Australia’s decision not to allow people to leave their homes to attend camp until it is safe to do so.

Jamal is 13 years old and lives at home with Mum (Tessa), Dad (Warren) and his three older sisters Amira, Iman and Samya. Jamal noted that Axel the pet turtle and six goldfish were also part of the family.

Jamal loves playing on his iPad and is currently occupying his time in isolation playing Marvel Puzzle Quest, this is obviously between school work and quality family time.

Jamal is also a huge superhero fan, and his favourite superhero is Kid Flash, who I soon learnt is Flash’s nephew. Kid Flash’s superpower is speed force (but he isn’t as fast as the Flash – as nothing can beat the Flash) – The things you learn!

At the beginning of this year, Jamal transitioned into high school (Berendale Special School). When I asked if this was a challenging time for him, I was surprised by his denial of any challenge in starting high school. He said that beginning year 7 was easy. Mum (Tessa) confirms that they had a relatively seamless transition.

The principal and his teacher’s aides at St Kilda Primary School all went with him for a tour of Berendale at the beginning of term four last year and spent the term talking about it and getting him used to the idea which really helped.

Tessa Maguire (Mum)

After school as extracurricular activities, Jamal participates in an All-Star Sports Program. They provide a different sport every week. Jamal’s favourite sport is soccer and he loves kicking goals. Jamal also goes to gym/physio twice a week and does swimming lessons weekly and trains for the Melbourne Southern Special Olympics Swim Squad every fortnight.

Jamal loves swimming and enjoys the feeling of being in the water. His favourite stroke is backstroke. Jamal says he is “very fast and has won 3 different ribbons at competition level. First for freestyle, second and the third for backstroke”.

Jamal has been swimming since he was a baby, he’s always enjoyed the water and swimming. 

When speaking with Tessa, it was clear that Jamal’s friend Alana was his inspiration for wanting to compete in swimming. Alana has been very successful with her swimming and has been a competitor in the Special Olympics.

Jamal’s recent achievement in his swimming will see him compete at the 2021 Special Olympics Junior National Games in Tasmania.

When asked what his dream for the future is, Jamal says that he wants to compete in the International Special Olympic games.

I want to compete in the International Special Olympic Games, where I go overseas and win medals

Jamal Maguire

Being in isolation is difficult as Jamal is not able to be in the water and practice his swimming. Still, I’m sure we’ll see him out in the pool soon, representing Victoria and bringing home a gold from the 2021 Special Olympics.

Asking Tessa about Jamal and his swimming achievements, this is what she had to say:

“Jamal has always loved swimming, and when he saw Alana with all her medals, he asked me what he had to do to get medals too.  I asked about the Special Olympics squad in our area and found that it was very easy to get in as they are very inclusive.  And the competitions are formatted so that those of the same abilities are grouped together.  It is then up to him to beat his personal best times, and he would have a very good chance of getting ribbons and medals.  He tries very hard, and we’ve seen his swimming improve so much with future competitions as an incentive.  We are happy that he has a sport he can do really well in and on his own terms as opposed to a team sport where there is too much pressure to perform”.

We are all looking forward to seeing Jamal compete at the Junior National Games next year and hopefully in the International Games one day.

Prader-Willi Syndrome (PWS) is a rare, complex, unique, life-threatening multistage genetic disorder which affects 1 in 15,000 births and results in an abnormality of chromosome 15. PWS can have a significant impact on behaviour, learning, mental and physical health, community inclusion and social relationships. People with PWS exhibit high anxiety, complex and challenging behaviours and cognitive dysfunction throughout their lives. PWS is a spectrum disability, and the degrees of visual abnormality varies immensely. Many people with PWS also have psychiatric problems and autistic characteristics. A defining characteristic of PWS is hyperphagia, or a compulsion to eat.  For more information visit www.pwsavic.org.au

Prader-Willi Syndrome Association of Victoria (PWSA Victoria) is a volunteer lead ACNC registered Australian Charity, with many volunteers having lived experience. Their role is to work closely with organisations around the world, whose vision and purpose align with their own, to ensure their local PWS community is well supported, while researchers around the world work hard to find a cure and viable treatments. The PWSA Victoria’s aim is to continue to break down barriers and create a world where everyone with PWS has access to the right tools, to enable them to live a full and inclusive life. For more information, please visit www.pwsavic.org.au

Renee Di Genova
Article By Renee Di Genova

Renee enjoys working with organisations to improve business outcomes by implementing and reviewing procedures to assist organisations to work more efficiently, effectively and strategically. Renee is mother to 3 children, the youngest of whom was diagnosed with Prader-Willi Syndrome not long after birth. Renee now spends her days caring for her son and volunteering full time as President of the Prader-Willi Syndrome Association of Victoria, helping to build on the supports and services provided by the Association since 1979.