Gisele & Johan's Miracle

Let me introduce you to our beautiful children, Gisele (6) & Johan (4). Gisele is very playful, enthusiastic, sociable, fun and cheeky. Johan is sporty, affectionate, loves cars and has a great sense of humour. They are both very happy and smiley children and love school and learning.

Since Gisele was born she met all her developmental milestones but there was something strange when she began to walk as a toddler. We always thought she would grow out of it. Then Johan was born a couple of years later. After 5 weeks of having him with us, we received one of the worst news for a parent.

Gisele was diagnosed with a rare genetic condition called Ataxia Telangiectasia (AT in short), a very complex neurodegenerative condition with no treatment or cure available. We were in complete shock. We were told that our daughter would not grow up like most children and would lose her ability to walk, drink and eat independently, speak clearly and read as well as potentially have a weaker immune system and a higher risk of cancer…. and all by the age of 10 years old. Yet, they cognitively are not affected and aware of it all.

Our world came crumbling before us. Life for us would be forever changed from this day onward….

That same day they suggested testing our son Johan, a little baby at the time, and another month later, very sadly we were told that Johan was also born with Ataxia Telangiectasia.

For the last 4 years, we have been living with AT. Some days we feel low, and others we try to forget what the future holds. But regardless, we always have one thing in mind, which is to try to find ways to help our kids have a better future and to make their lives as normal as possible. This is considering the ever increasing treatment needs required in order to keep their health at bay.

Gisele and Johan's needs span from private specialist physiotherapy equipment, to alternative treatments like acupuncture, naturopathic, osteopaths, massages, to vitamin supplements, and countless other medical expenses which the list will be too long to list here. 

 With Tree of Hope's support, we aim to help maintain our children’s physical abilities as best possible through this very difficult journey and most of all to see our lovely children Gisele and Johan continue to thrive as they have until now.

 If you wish to donate to our fund, please use the following Tree of Hope link (Gisele & Johan’s Miracle - Tree of Hope).

Thank you so much for reading our story.

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• 7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.
• If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects.  If in those  circumstances we are unable to use all or part of the funds for the  benefit of our child in accordance with Tree of Hope’s charitable  objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.