A huge thanks for all the support and donations that we have received thus far. We are planning two more events for 2014 and will post the details as soon as we have finalised them. For now I have requested that our fundraising goal for Jack be revised to $5000 as I think we need to and can achieve this. Please keep spreading the word, your ongoing support is appreciated.
Marathon number 6625 is done! I have renewed respect for Sarah Priede-Larter and anyone else that has done that run and especially under 4 hours. I don't think there's a part of my body that doesn't hurt. The first half went great, they lucky the harbour bridge was not in the second half as I would have thrown myself off it. I had a terrible run but I can take pride in the fact that I didn't walk at all. Thank you Jack for getting me through the last 10 kilometres.
A huge thank you for all the support and donations! For those of you that have not donated yet and were waiting for me to actually complete it. You can donate now!
This video is made with a vision to end the commercial sexual exploitation and trafficking of children in New Zealand and around the world.
I brought him home from school today and before I even noticed he had charged off down the driveway and was walking down the street. he stopped when I called but gave me a look as if to say 'come on mum, let me show you what I can do'. So I let him. And he ran almost the whole was round the block. He started on his own and then about a quarter through took my hand and then really stepped up the pace taking big strides. My heart is so full of love for my feisty little guy.
A quick update on our journey with Jack (Jogging for Jack and Jogging for Jack in New Zealand). We have successfully managed to decrease one of his anti-seizure meds by 2 dosages over the last month. We tried twice in May to decrease and both times failed with us having to add extra meds into the mix temporarily to calm things down. It may not sound like a lot to you but the 1ml decrease has made a significant impact on his clarity, focus, strength and balance. Doug Larter and I realised over the weekend that he has been looking so different because when he's walking he's not looking down at his feet but rather looking up at where he is going - may seem small to you but it takes confidence and strength to let go of looking at where you are putting your feet and rather look at the world around you. He's also eating so much better - even feeding himself some of his meals (finger foods) which makes meal times so much more pleasant and less stressful. It feels like he's taken a jump forward again and we are hopeful that we can continue supporting this progress and hopefully carry on weaning these horrible meds out of his system. The last 10 kms of my marathon on Sunday was all for him - that's when I have to dig deep to keep going and Jack gives me the strength to keep on fighting and pushing. Thanks my boy for everything you are teaching us about love.
Hi my name is Sarah and I am mum to 2 wonderful and loving children, Jack (4) and Max (almost 2). On the 10th February 2012 I found Jack my normal, healthy, bright, funny boy lying in the bathroom doorway having what I presumed was a seizure. Never having seen one before let alone in my own son I immediately called an ambulance and from there things have never been the same. We spent a week in free fall. Just trying to work out what was going on. From day 1 where he has 3 seizures initially diagnosed as fever seizures, then a reaction to ingested poison, possible brain tumor and finally after everything had been ruled out viral encephalitis. This is a condition where a virus (doesn't matter which) gets into the brain. Symptoms and outcomes vary vastly from a mere headache to paralysis, seizures and comas. This also has the highest mortality rate of any virus. Though, apparently if you survive the expected recovery is supposed to be good. Jack had seizures, so severe he had to be kept in ICU for over 4 weeks. He was intubated, had a tracheotomy to assist him with breathing through the seizures and spent the entire time either postectal from the seizures or sedated from drugs. he turned 4 in ICU and slept through the small party we where allowed to have in the ICU waiting room for close family. Finally the seizures abated and we were shown what the encephalitis had done. He was basically fetal coming out of ICU - having not been conscious for so long and not moving despite all the physio he received in ICU - he spent the first day just shrieking and slapping a hand against the bed. He could hardly move, eyes were divergent and he slept a lot. It took us 4 weeks in the pediatric ward before we were allowed to take him home and then only after he picked up a 2ndary infection in the hospital which started seizures again (which upped his meds) and only after he had an op to insert a feeding PEG into his stomach so we could be assured he would get the nutrition he needed without a pediatric nurse giving him a naso-gastric tube each night for overnight feeds. He has now been home for almost 5 months. He has been eating for over 2 months now, and can walk if you hold his hand though he does tire easily. His is unfortunately on a lot of medication to suppress the seizures - currently on 5 meds with different dosages day, mid-day and evening. He has a handful of words. He has therapy almost every day and recently he has been going to school for an hour or two with a minder. I have to work though and so I have had to enlist the help of someone to drive him to his therapies and school and then home again when I can't. We also have various therapies to pay for which medical aid covers some of (neuro physio, speech therapy and OT) but some they don't (body stress release to relieve stress from the meds he is on). Currently medical aid is supporting us month by month but they have been at pains to point out to me that they don't have to pay for this and it is an exception being made for now, but there are no guarantees as to how long this will continue. We cannot change our plan till the end of the year and that in itself is going to bring more costs. We are also looking for ways to support his system in terms of the weaning process of the anti convulsants - of the 5 he is on 2 have been reduced easily but 2 have not and have needed increased dosages to get the seizures back under control. They all have a sedative effect on him and so we are looking at alternative solutions like homeopathy to support him. So what this campaign is about, is to raise funds to support Jack in this recovery process. Scientists believe that the greatest recovery comes in the first 2 years after an insult. We want to take advantage of that window as best possible. Money raised would go towards paying for a driver when I have to work, paying for therapies that the medical aid doesnft pay, paying for anti seizure medication (not all is covered by the med aid) and minders to look after Jack when I am not there to do it. We do not know how long this will go one for - maybe the rest of his life though as a mother I just can't accept that. While he is making progress there is still hope. I am taking the opportunity to run a half marathon here in Cape Town on the 7th October - a beautiful but grueling run along Chapmanfs Peak drive - a very steep road running along the coast and am asking for anyone willing and able (times are tight for us all!) to sponsor my run and give Jack the best opportunity to make a full recovery. Thank you for your support. Love Sarah Larter
