A Little Boy With A Rare Genetic Disorder 

“Our lives have completely changed since he started ABA therapy.

…He is learning to talk in simple 2 or 3 word sentences. He still needs prompts, but he is learning…Communication is key to all of us, and I can’t bear to think about not being able to get my point across. We need Joshy to tell us how he is feeling, if he is not feeling well, if something hurts, if he wants to do a particular activity and even if he is craving his favourite meal. We take these things for granted, and I want Joshy to have the same voice as we all do.

Joshy’s therapy funds will run out the first week of November 2024. And then there is no more. Despite having full time jobs, we just aren’t able to provide the high costs of the therapy. I worry that even a short break from therapy will cause him to regress and all the progress that he has made will disappear and he will revert to the uncontrollable, aggressive and unhappy boy we once had.”

– Cary-Anne, Joshua’s Mum

At just 6 years old, Joshua (or more affectionately known as Joshy) has faced more challenges than most of us could imagine. Diagnosed with Bainbridge-Ropers syndrome, a rare genetic disorder, Joshy struggles daily with developmental delays, Autism, and physical difficulties. Yet, beneath those challenges is a bright, joyful child who loves to smile, dance, and connect with those around him in his own special way. Joshy’s journey is one of courage and growth, and with your support, he’s been making incredible progress. Now, he needs our help to keep moving forward.

This is Joshy’s second fundraiser with Ray of Hope. Last year, we raised $23,787 to support his therapy needs, and your generosity has made a world of difference. Joshy is growing, learning, and gaining new skills every day, but his journey is far from over. With continued therapy, Joshy has the potential to achieve even more, but he needs our help to make that happen.

A Continuing Need for Therapy

Joshy’s team of therapists sees the potential for even greater progress. They hope to continue his Applied Behavioural Analysis (ABA) therapy to further enhance his communication skills, help him gain attention appropriately, and foster independence in managing daily tasks. There’s a concern that without ongoing therapy, Joshy may face regression in his learning and struggle to keep up with new challenges as he grows. ABA therapy, at $1,300 a month, is essential to ensure that Joshy continues to build on the gains he has made.While Cary-Anne and Syamill work full-time and take on additional ad-hoc jobs to make ends meet, the therapy costs remain too high for them to bear alone. Ray of Hope is raising $15,600 to fund another 12 months of therapy for Joshy, helping him continue to thrive and build the skills he needs for a more independent future.

A Year of Progress

Since his previous campaign, Joshy was introduced to an Augmentative and Alternative Communication (AAC) system, which has allowed him to communicate beyond simple picture cards. With this tool, Joshy has developed the ability to express his needs more clearly, forming simple sentences like “I want [item]” and two-word phrases to describe pictures. His vocabulary has grown, and he can now use full sentences to communicate—an incredible leap forward. He’s also begun initiating greetings and inviting others to participate in activities, demonstrating growing confidence in social settings.

Through his therapy sessions, Joshy is learning essential skills, like gathering and packing his items without prompting, and he remains an active and happy child who loves to engage others through gestures like smiling, waving, and dancing. These milestones are significant for a child with Bainbridge-Ropers syndrome, and Joshy’s parents, Cary-Anne and Syamill, are overjoyed with his progress.

A Personal Appeal from Cary-Anne, Joshua’s Mum

“It seems like just last week we were writing to you about our son Joshua, and asking for your kind help for his therapy. We were gobsmacked by the support we received and the gratefulness and gratitude we felt cannot be expressed in words. 

So, let me tell you what your generosity did for us and for Joshy.

Our little boy is growing up and [in] the last year he has grown so much in his ability to communicate and control his actions. In February, we managed to get an ipad and an AAC system through SG Enable technology fund. Through his teachers at his school and his therapists at Think Kids, he has learned to communicate his basic needs. He can still be silly and press the same button one hundred times, but I love that he has a silly sense of humour. After a few technical adjustments only allowing one push per button (thank you technology!) He is learning to talk in simple 2 or 3 word sentences. He still needs prompts, but he is learning. 

Joshy does not throw items nearly as much as he did! We have not had toys or household items broken in quite a while, and I know this is because he is better able to communicate and so doesn’t get as frustrated. Communication is key to all of us, and I can’t bear to think about not being able to get my point across. We need Joshy to tell us how he is feeling, if he is not feeling well, if something hurts, if he wants to do a particular activity and even if he is craving his favourite meal. We take these things for granted, and I want Joshy to have the same voice as we all do.

His spitting and hitting and pinching episodes are much less too! Well, except for his poor older brother! I guess as brothers go, we should expect banter and rough housing, but our oldest (who is only 8 years old), takes whatever Joshy gives him and he never retaliates, even though our oldest seems to be Joshy’s punching bag! Joshy is very jealous and will attack his brother if I give him any attention, so at times I separate them because I don’t want my oldest to think it is ok. This is difficult, I want my family together! And this is something I hope Joshy will grow out of. But he needs help to do so.

So, as you can see, our lives have completely changed since he started ABA therapy. Unfortunately, therapy is like chronic medications. You cannot take it for a short time and then everything will be ok. Joshy’s therapy funds will run out the first week of November 2024. And then there is no more. Despite having full time jobs, we just aren’t able to provide the high costs of the therapy. I worry that even a short break from therapy will cause him to regress and all the progress that he has made will disappear and he will revert to the uncontrollable, aggressive and unhappy boy we once had. Other patients around the world with Bainbridge-Ropers Syndrome, the biggest struggle is that they become aggressive and many have to be institutionalised. We do not want this to happen, so we need Joshy to get as much support and intervention as possible while he is young and as he continues to grow. This is to safeguard him, as well as others around him. 

So, I am asking again, for any assistance you can provide, to help Joshy continue his ABA therapy sessions. Every little bit helps, more than you can imagine. 

Thank you!

Cary-Anne”

Your Generosity Can Make a Difference

By supporting this fundraiser, you’ll be giving Joshy the opportunity to continue developing his communication, social, and functional skills. Your contributions will help him build a brighter future, where he can interact more meaningfully with the world around him and continue his journey toward independence. Every donation counts, and your kindness will have a lasting impact on Joshy’s life.