Please help us teach Charlie how to eat.
You can help Charlie to learn to eat.Auckland
Thank you everyone so very much. So grateful to The Project viewers, friends, family around the world. Thank you to my amazingly supportive yoga students, and art and book club mates too. We are off to Austria!! I will keep the page going a bit longer as we will be paying for $1000 a month net coaching on our return and no idea yet how long that will be for until we see how we go. None of this would have been possible without Givealittle such an amazing gift.
Charlie is a lovely teenager with Down Syndrome. As a newborn baby, he was desperately sick with epilepsy and then went into heart failure and had to have open heart surgery. He then developed a painful and very rare bowel condition which also needed surgery. As a result, he never learnt to eat as the strain on his heart caused more seizures when he tried. He was tube fed directly into his stomach. Then as a toddler, he developed a very bad reaction to the tubing and as a last resort we took him to a famous feeding clinic in Austria. This clinic is the only one of its kind, and the amazing people there helped wean him off the tube and saved his life. He still couldn’t manage solid foods, but since then he has managed to live well by eating baby food, soups and yoghurts, But as a growing teenager, the volume of food he needs makes it hard to get all of this down. He would love to be like his friends and learn to bite and chew so he can enjoy a piece of birthday cake or a pizza. Not as easy as you might think for a kid that missed out on so much as a young child due to illness. We have tried the possibilities in New Zealand but with his complex history, the clinic that helped him before is Charlie’s best option. They are confident they can help with an intensive period of therapy in the hospital there. As a single mum, it's hard to prepare 1.5 litres of special pureed food each day and going anywhere means preparing flasks and pots of food to take with us. Charlie is the most amazing young man and works hard at school and has overcome so much already I would love him to take part in something that is so important to us all - sharing of food and enjoying social events and I am looking forward to a future for him where he can be more independent. I am looking for help from the community as I am still paying off the last trip to Austria 10 years ago and I am unable to fund the whole cost of this new treatment myself, though will be contributing as much as I can.
Use of funds
For specialist therapy in Austria including two weeks of intense treatment and Skype follow-ups. Flights and accommodation. Any surplus or inability to raise full amount will be donated to Upside Downs a charity that supports children with Down's Syndrome.
Thank you so much to everyone that helped get Charlie to Austria. We are so incredibly grateful. There is no way we could have managed this without your help.
The last clinic of the year was held in October and we made it! Charlie has successfully transitioned from eating baby purees to overcoming his chronically severe aversion to lumps in food and is now biting and chewing and trying new thing! We still have a lot of work to do but the trip way surpassed all our expectations.
Charlie is really proud of himself and his confidence has been dramatically boosted. He will achieve independence with food now. He will continue with ongoing net coaching and supervision from the team in Austria for the next 6 months and start with physical therapy that they have recommended here in NZ. Cheers everyone and Bon Appetit xxxx
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This page was created on 24 Jun 2019 and closed on 1 Dec 2019.