This is Dimi
Dimi is a beautiful little boy with big brown eyes, curly hair and a cheeky smile. Like other boys his age he likes music, being outdoors and playing with other kids.
Dimi has been part of our Can:Do family since his birth and his family have decided to share their story with you. His mum Frances hopes it will spread awareness, educate the community and raise much needed funds so we can continue to provide the best possible services for kids with sensory impairments, like Dimi.
The news that Dimi had Stickler Marshall’s syndrome was a huge shock for Frances, she knew Dimi was born with a hearing loss but this came totally out of the blue.
“When I found out that Dimi had Stickler Marshall’s syndrome, I didn’t know what to do, I didn’t know what to think or what this meant for the life I have fallen into,” says Frances.
Stickler Marshall’s syndrome is a rare autosomal dominant genetic disorder; there is a great deal of variation with no two cases presenting the same. The most common areas to be affected are the eyes, which are uncommonly large, mouth and facial structures as well as hearing and vision loss. Some may be more severely affected than others and there is no way to identify how the syndrome will develop over the years.
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Frances took everything a day at a time, working with the hospitals recommendations to give Dimi the best life she could and most importantly unconditional love.
“There were just so many appointments. Appointment after appointment, after appointment, there was no way I could work and still ensure I was giving Dimi the love and support he needed. It was a tough decision to stop working but every time I see him smile I know it was the right one,” Frances says.
Frances met with a number of different service providers, but felt that Can:Do 4Kids were the most knowledgeable, had the best therapy flexibility and made her feel the most comfortable.
As a result of the Stickler Marshall’s syndrome, Dimi has some distinctive physical features such as large eyes, a flat nasal bridge and palate abnormalities, but to those who know him he just looks like Dimi, a beautiful boy who has the world at his feet.
Frances recalls “Dimi and I were out shopping one time and a lady came out of a shop and told me she thought Dimi looked different, strange almost and asked me why. I felt so angry, the lack of education around disability is one thing that I will never understand, but I have learnt that I need to be educating those who do not understand, for Dimi - for Dimi to live a normal life….
It has been difficult meeting people who understand the challenges of raising a child with disability and their complex needs, Can:Do 4Kids have helped so much with this”.
Dimi is currently receiving Occupational Therapy to facilitate his sensory regulation and support increased attention and learning. Dimi also attends the Learn 4 Kindy group that facilitates his fine motor, gross motor and social skills in preparation for beginning kindy.
Frances can be assured that Can:Do 4Kids will be there for her family, not only now for Dimi’s early development but also through his transition to formal learning like kindy and school so he can access schooling in the same way as his peers.
“Can:Do 4Kids made me feel so comfortable from the very first interaction and I know they will be with us every step of the way – their home visits are amazing,“ says Frances.
Dimi’s Speech Therapist Jo says, “Dimi will have to overcome many challenges and hurdles through his life; he presents with delayed speech and language skills and needs specialist help to develop his fine motor skills. Dimi will require ongoing therapy to support his development. Frances’ dedication to Dimi is amazing she has taken on board language stimulation activities and implements these into his daily routine such as book reading every night and he now requests multiple books to be read, which is such an amazing outcome”.
Stickler Marshall’s syndrome has many unknowns, but Frances can be sure that Can:Do 4Kids will be there every step of the way to ensure that Dimi has the brightest most independent future he can.
“I fear that his retina will detach and he will be legally blind, this could happen at any time or it may never happen, but I know that the support is out there for him to overcome that challenge and I can’t thank Can:Do 4Kids enough for helping me to help Dimi,” Frances adds.
A donation today will ensure kids like Dimi get the support they need as early as possible. That is an amazing gift. It is only with your support that we’re able to assist every family who turns to us for help.