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Fundraising for Zachary de Wet – Hunter Syndrome

Zachary`s story:

“Zachary is happy, incredibly busy, and he loves every moment of life. To Zach, the world is full of possibilities and endless fun, but shortly before his second birthday in March 2021, we got the news that Zach’s life will be nothing like we expected. He was diagnosed with MPSII.

Hunter syndrome is a very rare, inherited genetic disorder caused by a missing or malfunctioning enzyme. In Hunter syndrome, the body doesn’t have enough of the enzyme iduronate 2-sulfatase. This enzyme’s job is to break down certain complex molecules, and without enough of this enzyme, the molecules build up in harmful amounts. The buildup of massive amounts of these harmful substances eventually causes permanent, progressive damage affecting appearance, mental development, organ function and physical abilities.

Hunter syndrome occurs in 1 in 120 000 to 170 000 boys. There’s no cure for Hunter syndrome.

Treatment involves managing symptoms and complications through weekly Enzyme Replacement Therapy. This is an extremely expensive treatment but absolutely life changing and life saving. With treatment, life expectancy is much higher, meaning Zachary can live well into adulthood and live a healthy long life. Without treatment the disease will progress and life expectation is 12 to 18 years.

Signs and symptoms include:

• Reduced endurance
• Vision problems
• Reduced field of vision
• Optic nerve damage
• Glaucoma
• Enlarged liver and spleen (hepatosplenomegaly)
• Umbilical and inguinal hernias
• Abnormal facial features (such as flat face, flat and depressed nasal bridge, slightly bulging eyes, enlarged tongue, thick lips)
• Large head (macrocephaly)
• Short stature
• Lung problems
• Reduced lung function
• Frequent, recurrent lung infections
• Sleep apnea
• Potential developmental delays (some may have normal intelligence)
• Potential slowing of mental development
• Carpal tunnel syndrome
• Fluid in the brain (hydrocephalus)
• Compression of the cervical spinal cord
• Thick lips
• Enlarged tongue (macroglossia)
• Abnormal teeth (widely spaced and very thin enamel)
• Frequent ear infections (otitis media)
• Hearing loss
• Frequent and recurrent sinus infections (sinusitis)
• Heart valve disease, especially aortic valve
• Abnormal heart muscle (cardiomyopathy)
• Irregular heartbeat (arrhythmia)
• Angina
• High blood pressure (hypertension)
• Poor circulation
• Joint stiffness
• Skeletal abnormalities (dysostosis multiplex)
• Abnormal hip formation (hip dysplasia)
• Bone deformities in the spine (scoliosis, gibbus, kyphosis), or knees (knock-knees or genu valgum).

Zachary suffers from a wide variety of these symptoms, he therefore has an extensive medical team comprising of the following specialists monitoring and taking care of him: Paediatrician, Pulmonologist, Cardiologist, Ophthalmologist, Ear Nose & Throat Specialist, Neurologist, Occupational Therapist, and a Speech Therapist.

Unfortunately treatments and Specialists are extremely costly and medical aid does not cover all of this. We are continually in need of funds for those additional expenses.”

Please open your heart to Zachary and his family today and support our fundraiser. All the proceeds from his “Amazing Grace Bracelets” are donated towards his ongoing medical care, treatment and therapy. Together we CAN make a positive difference in his life!

Alternatively, please consider a donation; any and all donations welcome. REF: Zachary de Wet.

Fundraising for Zachary de Wet

Amazing Grace Bracelets – Ladies

The Amazing Grace Bracelets” for Zachary consist of turquoise and black wooden beads with silver and diamante fillers.

Charm options:
Believe/ Feather / Cross / Hope-Awareness Ribbon.

To place an order, contact the agent in your area or shop online.

Amazing Grace Bracelets

Shop Online

Amazing Grace Bracelet – For Men

The Amazing Grace Men`s Bracelet” for Zachary consist of turquoise and black wooden beads with silver fillers.

Colour Options:
Black & Turquoise Mix
or Plain Black.

To place an order, contact the agent in your area or shop online.

Amazing Grace Men`s Bracelet

Shop Online

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