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Meet the Parents

Gilberto Fiuza

Gilberto Fiuza

Parents
Gilberto and Anelise Fiuza

Profession:
Quantity Surveyor
Assistant General Manager

Age of parents:
34 and 31

Child’s name:
Hugo

Age: 6 Years

Is this your only child?
No, younger twin sister Bianca - who is healthy and full of beans!

Diagnosis of child:
Quadriplegic cerebral palsy (severely brain-damaged, no control of motor functions). Hugo can not do anything for himself, is “legally” blind and is supposedly a “vegetable” according to his MRI scans. Hugo does breath, swallow food and fluids fed to him. He gurgles and reacts to familiar voices and sounds (including his mom’s Portuguese concertina playing and his dad’s guitar playing)

What are the biggest challenges facing your child on a daily basis?
Hugo is getting heavy - currently 21kg! Hugo’s kyphosis (rounding and curvature of the spine) is getting worse and we are concerned that we will have to pursue medical intervention in the not too distant future.What are the happiest moments you have with your child on a daily basis

What are the happiest moments you have with your child on a dialy basis?
Hugo, smiles and loves receiving all the attention he can get, he is so adorable. Hugo is ticklish on his chest and laughs just like a normal boy! He is an angel in our midst.

Are you married?
Married.

Has your special needs child had an effect on your marriage?
Yes, Hugo’s disability initially threatened to tear our marriage and family apart because of allegations and charges brought against us. We are now much stronger and stand up for each other and our family, no matter what!

Are your family and friends supportive?
Yes, we are very close with our immediate family and we try and get together as often as possible to enjoy all of our kids moments of joys!

What has your child taught you about yourself, both positively and negatively?
Humility, self-respect, consideration, patience, persistence, health-awareness. We are both over-weight and are needing to consider our health more seriously, for the future of our family.

Do you take time out, if so what do you do to relax?
Not sure if I can call it “time-out”, but we participate in a Portuguese folk group called “terras do norte” (translates to “lands of northern Portugal”) we have practices weekly and perform for various Portuguese parties (such as Lusito Land) and catholic church parties / fund raisers - especially for Portuguese community.

What has made the biggest difference to your child’s quality of life?
Continuous physiotherapy with Melinda Barnard, hippotherapy with Natasha at the Equestrian Centre, teacher Susana at Lusito School and all the other activities Hugo does (including aqua therapy with Marinda Linde and Shanleigh Borough)

What is your dream for your child?
What any other parent would want: to have a healthy, naughty but loving child that will one day look after his/her parents in their old age and outlive them - to carry on our family names!

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