Follow Matthew's progress on:
http://matthewourmiracle.weebly.com/

Today when I fetched my son, Matthew, from school, and he was lying in his teacher's arms - listless and moaning, the feeling of knowing that I caused this to my son, made me physically sick. I am having to starve my child, to try to "motivate" him to eat or drink.

Matthew was born with a very rare syndrome and had 11 major operations before he was 5 months old. He was born with no airways inside his nose and he was unable to breathe. The surgeons had to drill through his tiny nasal cavities to create airways. At the same time, 2 holes were discovered in his heart and his chance of survival was 10%. Matthew fought long and hard on life support, and through a huge amount of suffering for him, he spent 6 months in ICU, being prodded, pricked every 4 hours until he had no veins left to use, suctioned every 3 hours and in and out of painful surgeries, including 5 hour open heart surgery. This little fighter then came through all that and was admitted again with septicemia. He was placed in an isolation ward back in ICU with MRSA - the ICU super bug, which at the time, was killing many many children. As he had machines in his throat for all this time, Matthew was unable to suck, so a gastrostomy tube was inserted directly into his stomach for feeding purposes. Matthew never gained that reflux to suck or to eat. We then discovered that Matthew was totally deaf. After an MRI scan, the results showed that Matthew has no auditory nerve, so cochlear implants and a chance to ever hear was not an option . The specialists could also see that Matthew had no vestibular nerve either - and therefore would have no balance to one day sit, crawl or walk.

When Matthew finally came home, Mark and I were determined to teach him how to eat, sign, sit, then crawl, then walk - against all odds. My aims were huge and "we would be undefeated". This little boy had suffered so much, we were now going to give him only the best. Being a very positive person, I persevered, as Mark did, and Matthew DID learn how to sit, crawl a little but walking requires alot more balance, so he still needs us to help him.

He has been AMAZING. We relentlessly gave him teaspoons of food every single day, until he finally starting taking a little. Matthew was diagnosed with CHARGE syndrome, which comes with swallowing difficulties, so we knew that feeding him was going to be a massive task. Also, with all the operations he had, alot of his anatomy was "re-arranged" to allow him to breathe, so that made feeding even more difficult.

Three hours of feeding him eventually became two and then one. However, after 5 years, it is still over an hour to feed him - and yet still just a few teaspoons. I wish I could say there has been huge progress over all this time - but with the feeding, I am afraid not. "Undefeated" is a tough goal with a little man like this one.....

Over this time, every specialist in this country has been seen - every dietician, every gastro-enterologist, speech therapist - you name it - we've been there - to help this little boy eat. He is totally dependent on this tube in his stomach for hydration and medication and he has to painstakingly sit and try to swallow some food most of the day. He refuses any liquid as this is foreign to him and frightens him when its in his mouth...

My final resort was reverting to information on the internet - about parents that have succeeded in weaning their children off the gastostomy tube. The success stories have been all about admitting their child to a feeding clinic in Graz, Austria. It is a 3-6 week inpatient programme where children are taught how to eat and drink, through a "starvation programme" but monitored with medical professionals, to avoid dehydration. BUT, they are also taught, as the parents are, to change "mentally" the concept of food and eating. DONT ASK ME HOW - ALL MY OPTIONS HAVE BEEN COVERED - AND ELIMINATED! I have been researching this clinic for two years now and I speak to more and more parents who take their children to this clinic. These children are not only eating and drinking, but JOINING their family for dinner - oh my gosh- that would be the most wonderful experience! (Especially for Matthew's twin brother and sister, who have just got used to eating on the step where Matthew is fed for hours).  Family life with this little boy has certainly taken on a whole new meaning......

After more research, I was directed to an "internet/email" course on weaning your child off the tube. This is what I started two days ago.....
Matthew did without his tube feeds and I was positive and convinced that he would get so thirsty and hungry that he would WANT to eat and drink. I gave him a bottle through his tube, while he was sleeping, to avoid dehydration, but this poor little boy is just getting so hungry and was awake through the night because of it. Not knowing that food and water will make him feel better, he just lies there and cries, waiting for "something to make him feel better". I really realised today that Matthew is not going to figure this out on his own and there is so much more to his syndrome and the swallowing difficulties, that I seriously need help on this one. He also cannot afford to drop weight, as he is under weight already. After years of getting him to eat and teaching him to take a few teaspoons, how THE HECK do I now undo all that?? I am TERRIFIED of him dehydrating, no matter how much "internet" help I have and most of all I CANNOT watch him suffer anymore than what he has. I just can't. No child deserves to suffer like that.

So today, Mark and I realised that we have no more choice and no options left than to take Matthew over to Austria, to get professional, safe help and admit him into this clinic to be monitored and taught.

Having two other children, it is going to be hard to leave them for 3-6 weeks, something I have never done before, but they have always been unbelievably understanding and they want Matt to have this help.
Mark is unable to leave work for this amount of time, and as the school holidays are coming up in June, I am able to get off work with my teaching - so I am taking Matthew in June.  We are busy awaiting confirmation on a place for him and to see if flights are available at this time.

We have to come up with a minimum of R250 000 for the clinic costs and accommodation costs, as well as flights, which we will cover. We are going to beg, borrow, bond, mortgage - whatever it takes.
I HATE fundraising and am useless at it, but I have been told that this is the best way to go.....
Please if anyone can help - or if you know of any company that would be able to sponsor or donate ANYTHING, it would be HUGELY appreciated.

I will continue feeding him through the tube - as I just dont have any other options left and cannot see him suffer through another day....

With all my thanks, love and appreciation - and from Mark too...
Joanne

Banking details: Nedbank, Account no: 1684033225, Branch code: 198765
Name of account holder: J Boshell
(we will be opening a trust account for Matt - details to follow)