Good Morning Angels: The Angels help a young brother and sister to fight their rare disease

Good Morning Angels: The Angels help a young brother and sister to fight their rare disease

The Angels give two-year-old Zariella van Eeden a chance to hear, as she and her five-year-old brother MJ fight their rare disease.

Martin Bester on Good Morning Angels
Jacaranda FM

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Five-year-old MJ and two-year-old Zariella are a very special brother and sister pair from Centurion. They are the centre of their mom, Carmen, dad Stephan and their grandparents' lives. The children are bravely soldiering on, facing medical challenge after medical challenge. They were both diagnosed with the same rare disease called Johanson-Blizzard Syndrome, two years ago, when MJ was two and a half and Zariella was just 6 months old. They are in fact the only two known cases, diagnosed in South Africa.

The main symptom is their pancreatic insufficiency - which impacts the way their little bodies digest fat and take in proteins. This has an impact on their other organs and general physical development. They have to take medication before every meal. They follow very specific diet and have to go for blood tests every three months. They will never develop adult teeth and MJ had a procedure earlier this year, to prevent his milk teeth from falling out. Little Zariella has severe hearing loss. She had a cochlear implant procedure earlier this month - but her family are still raising the R52 000 needed to pay for her hearing aid needed to enable her to hear again.

Because the disease is so rare and not yet registered in South Africa, all medical procedures have to be paid from their medical aid savings account - which is not sufficient to cover all the costs for treatment associated with their disease. Carmen and the children have moved in with her pensioner parents to enable better support for their needs, while she works to pay the medical bills. But, this is not enough and they are falling behind - with a long road ahead. That’s why various listeners have reached out to Good Morning Angels for assistance on behalf of this special family.      

REQUEST FOR: Carmen van Eeden, mom of two-year-old Zariella and five-year-old MJ 

REQUEST FROM: Various listeners including Inanje Wolmarans

ANGEL 1: Sumarie Greybe, co-founder of Naked Insurance 

SPONSORING: Naked Insurance donates the R52 000 needed for little Zariella’s hearing aid - to enable her to hear again via a cochlear implant! This is part of the Naked Difference Programme, which ensures that, in years when claims are lower than expected, Naked Insurance donates leftover premiums to good causes instead of taking it as profit.

ANGEL 2: The Good Morning Angels Fund NPC

SPONSORING: The Good Morning Angels Fund will assist Carmen with R20 000 towards the on-going medical care of MJ and Zariella

ORIGINAL REQUEST:

Good day, Good Morning Angels,

This is Inanje Wolmarans, I would like to present the Van Eeden family to you for assistance if at all possible. You can read up on their story below.

However, in a nutshell, they are financially struggling to provide quality medical assistance to their children, who were both diagnosed with a very rare medical condition, Johanson-Blizzard Syndrome. This affects multiple organs including their livers, kidneys, ears, teeth, etc. Their little girl, Zariella (2.5 years old) has the opportunity to undergo a cochlear implant for her left ear to improve the quality of her life. This will cost them around R250K which they can't afford.

Any assistance will be highly appreciated and will take them a long way.

I am not family of the couple, only a concerned friend and I feel they deserve the opportunity to provide their children with a better quality of life, finances should not be a hindering factor.

I really hope for a positive outcome :)

Have a lovely day.

Kind regards,

Inanje

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