On the 6th June 2019 at Auckland's Starship Children's Hospital, Sonny's mother Renee was told the most devastating news.
Sonny was diagnosed with Duchenne Muscular Dystrophy.
Now, if you haven't heard of it you probably wondering what Duchenne Muscular Dystrophy (DMD) is. DMD is a disease that affects all the muscles of the body - the arms, hands, legs, and feet.
Over time his respiratory system fail and when it does worsen he will need to use a mechanical ventilation. DMD also affects facial muscles, which will make it difficult for Sonny to chew and swallow. This followed by heart issues like cardiomyopathy which lead to heart failure and arrhythmia.
Also affected is the brain, which can cause intellectual disabilities, behaviour issues such as obsessive-compulsive disorder, ADHD, ADD, and Autism. Typically boys like Sonny diagnosed with DMD loose their ability to walk between the ages of 10 and 14. Sonny will loose most of his upper body strength, including the ability to move his arms, by his late teens.
Medical data suggest that young men with DMD survive only into their 20s.
Right now, Sonny is in the earliest stage of this crippling disease and is just like most other 6-year-olds. He is outgoing, loves going to the beach, getting up to mischief with his older siblings, playing with his pets and he absolutely loves dinosaurs! The main thing Sonny's family is focusing on at this stage is to try and give him the best life possible before this disease eventually takes over.
Even though there is great support through the Ministry of Health, Muscular Dystrophy Association of New Zealand and the Ministry of Education, there are somethings that are not covered.
All donations made go directly to Sonny. Sonny's family is currently saving up as much money as they can to prepare for Sonny's future.
If you would like to help Sonny, you can make a payment using your credit or debit card by clicking the donate button below and you will be redirected to Sonny's Give a Little page.
Any help is appreciated, we can't thank you enough!
All donations are paid into the verified account of Sonny's mothers account.
22 August 2019 - Sonny has been invited to partake in an exon skipping trial, which he will be starting next year.
20 August 2019 - Sonny will be starting steroid treatment on the 1st September.
We would like to say a big thank you to The Muscular Dystrophy Association of New Zealand. They do amazing work for families living with this terrible disease. All the amazing photos on this website were donated by Evermore Photography. So thank you Gina, we really appreciate it. Thank you Rainbows End for giving Sonny the chance to enjoy New Zealand's best and only theme park. Cheers Snowplanet for gifting Sonny a day out on the snow.
Lastly, a massive thank you to everyone who sends Sonny emails, and donates to his cause - Hemi, Samantha, Kristi, Gemma, Michael and Bronwen, Deb, Kim, Christine, Julie and Sue!