Archive for April, 2009
What a long day! We left Caernarfon at 4am on Wednesday 29th April, and have been travelling until 1200pm Hangzhou time (5am British time) Thursday 30th April. Our flights went well, although almost an hours delay at Heathrow. The flight to Shanghai was half empty and so we all had a chance to stretch out. Josh was really well behaved, and slept for around 5 hours on and off. When we arrived at Shanghai, we were a bit lost as we couldn’t find our transport. We had previously organised for a taxi shuttle via the hospital, but it turns out they got the times mixed up. Thanks to Johnny, Kate and their two sons Oscar and Theo, who we met on the aeroplane, they managed to organise transport to Hangzhou. This was an eventful journey, which took us approximately 2 hours and 45 minutes. The roads here are chaotic, the road lines and signs mean nothing to the drivers. We had about 5 near misses as we travelled to the hospital, narrowly missing pedestrians, cyclists, scooters, cars, trucks…
When we got to the hospital, we got the most amazing welcome from approximately 10 members of staff who all introduced themselves to us, carried our bags, opened doors for us, and gave us a tour of the Beike Treatment floor. We felt like celebrities!! All of the staff have been amazing with us and Josh so far, which is really nice.
We unpacked and settled ourselves into our new room, which consists of a large bedroom, with a double bed, cot, tv, dvd player, fridge, air conditioner, water cooler, and then a seperate closet room for all of our clothes, and a washroom. We then went for a short walk to RT Mart which is about a 5 minutes walk from the hospital. As we walked around, everyone could not stop looking, and cooing at Josh. This was very strange at first, but we realise that its not very often that they see Westerners, especially young children like Josh.
Josh has been really sleepy this evening, but we’ve been mean and tried to keep him up, so that hopefully he will sleep well tonight. Josh will have a blood test first thing in the morning, followed by a meeting with Dr Tony, and some physiotherapy. We have had the schedule for his first Stem Cell Treatment which will take place on Monday at 2pm, via an IV line.
I can’t quite believe that we’re finally here, and would like to thank everyone once again for making this possible.
April 30th, 2009
It’s 20:10hrs on Tuesday 28th April, our bags are packed (overloaded)! We’re being picked up tomorrow morning at 04:30hrs, and we’ll then travel to Manchester Airport, where we’ll catch a flight to London Heathrow. Followed by our flight to Shanghai at lunchtime. Josh has got his own seat booked to give him plenty of space, which thankfully also gives us an extra suitcase allowance. I can’t believe we leave tomorrow, although the funds have been raised in an amazing 5 months, I’ve been dreaming of this trip for months and months!
I’ll write again on Thursday, once we’ve arrived in Zhejiang Xiaoshan Hospital, Hangzhou.
April 29th, 2009
This afternoon Josh’s new Hyperbaric Oxygen Chamber has arrived all the way from California. It has arrived on a pallet of 5 very large boxes. Now there’s a job for DIY experts Anthony, my dad, Kevin and my brother, Chris to put it all together!
Josh won’t use his chamber for at least three months after we arrive home, and will then spend an hour a day in the chamber with me, Anthony or one of my parents, every day for a year. The oxygen therapy will hopefully keep the stem cells working, and improve the chances of Josh’s eyesight improving further.
We have been able to purchase the Maxi Chamber. This measures 40″ diameter and 9′ in length, and there is room for 2 adults inside, or even a child under 40″ tall to stand. I will hopefully post a picture of the chamber on this blog, once its been put together.
Only 5 more sleeps to go…
April 24th, 2009
Joshua Matthew Clark was born on the 27th June 2007, weighing a healthy 7lbs 4.5oz. When he was around 6 weeks old, my mum, Gill noticed that his eyes weren’t tracking objects as they should. I was in denial, and thought and hoped that he was a lttle slow developing. After some time, I realised that he couldn’t see. I was devasted, my perfect gorgeous little boy was blind. I was petrified, how will he cope? How will we cope? Was he going to be able to go to ‘normal’ school? How was my little boy going to get on? What was wrong with my little boy? Why was he blind? What did I do wrong? I spent hours on end searching the internet for possible causes of childhood blindness, and treatments. Due to waiting lists, we didn’t get Josh’s diagnosis until just before his first birthday, which was Septo Optic Dysplasia, which Josh was mainly affected by Optic Nerve Hypoplasia, and wasn’t displaying any of other symptons associated with SOD. I had read up on both of these conditions, and seen remarkable stories about children with the SOD and ONH, which were blind, receiving stem cell treatment and now being able to see. I wanted to go to China immediately!
In November 2008, we began our appeal for Josh to go to China for stem cell treatment and hyperbaric oxygen chamber which would cost a whopping£40,000! Within five months, our community had arranged a number of events, and have managed to raise £43,000. I am so overwhelmed by everyone’s generosity, and I would like to thank everyone once again, as none of this would’ve been possible. My husband, Anthony, my mum, Josh and I leave for Hangzhou, a week today, Wednesday 29th April. Josh will receive 8 stem cell treatments over a period of 40 days. I am feeling a mixture of excited and nervous.
We’ve just returned home from an evening at Cofi Roc, Caernarfon. There were over 10 local artists who have very kindly offered to entertain us for the evening. The evening was organised by my best friend, Catrin and her father, Ioan, as an opportunity to thank you to our community for helping us reach our target. So a big thank you to Catrin and Ioan too for a great night.
7 sleeps to go before we leave…
April 23rd, 2009
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April 21st, 2009
