Nine-year-old Ryan is sensitive, funny, kind and enthusiastic. In most ways, he is like any other child his age, however, Ryan has had to ‘grow up’ a lot quicker than his peers.
Ryan’s younger sister, Alisha, was born with a rare and debilitating skin condition called Epidermolysis bullosa (EB) disease. Since birth, she has required round-the-clock care from her parents and a team of dedicated health professionals. This has had a significant impact on the trajectory of her brother Ryan’s life. His mum Rumana shares:
“Our life isn’t simple. It hasn’t been since our daughter was born nearly six years ago. Our daughter needs everything we have, and all our energy to help sustain her.”
Ryan’s family moved to Australia ten years ago. All their family and friends are overseas, which means they have limited support and connection to help manage their daughter’s condition.
“All of our energy goes into supporting our daughter and our two children. For nearly six years, we haven’t had the ability to provide Ryan opportunities most kids might have at his age.”
Rumana, Ryan’s mum
Having a sibling with complex needs, has meant Ryan always puts others needs above his own. He tries to avoid causing additional pressure for his parents and takes care of himself as much as he can.
This is why Very Special Kids home volunteer program is so important. It can provide siblings, like Ryan, dedicated time to have fun, explore and connect with a dedicated volunteer.
Speaking about Ryan’s relationship with their home volunteer Janelle, Rumana shares:
“Janelle and our family just clicked together. She is sensitive, like we are, and warm and has lots of energy. She is extremely generous and full of heart. We have trusted her from the day we met her, and that connection has only grown so much more.”
Ryan and Janelle love spending time together. They go to the library, park and movies for day trips, and now twice a year attend the Lord Somers Camp together. Something Ryan’s family wouldn’t be able to attend with him otherwise.
“Our son’s face lights up when she comes to the door. It’s his favourite thing in his whole week. So many people come to the house to help support his sister, but he knows that Janelle is “there for him”.
She has become a friend, and a member of our family.”
“We worry we can’t offer him more, and then we see what Janelle does for him and we can relax, knowing he’s getting the experiences in life that he has needed for so long.”
In his own words Ryan shares, “I can talk to Janelle about superheroes and about lots of things in my family. We go on camp together and I get to play with lots of different kids. She’s very friendly. My favourite thing ever is going to the cinema with Janelle on my birthday to see a Marvel movie.”
“Also, I have lots of board games, but nobody to play them with. When Janelle comes over, we get to play whatever we want.”
If you are a Very Special Kids family who would like to learn more about our home volunteer program, please talk with your family support practitioner or call 1800 888 875.
To learn more about becoming a Very Special Kids volunteer, click here.
