Browse content similar to 14/01/2013. Check below for episodes and series from the same categories and more!
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Hello from West Sussex and welcome to Inside Out. Plenty to tell you | :00:06. | :00:12. | |
about tonight. Here is what is coming up. The dream is not such a | :00:12. | :00:16. | |
dream any more, it is a nightmare. Oh, we do like to be beside the | :00:16. | :00:19. | |
seaside. But for how much longer? People in West Sussex fight to save | :00:19. | :00:23. | |
their homes. The environmentalists are having too much of a say in | :00:23. | :00:29. | |
what happens. Is it fair to let nature take a house is a way? | :00:29. | :00:31. | |
And living with butterfly disease, the misunderstood condition with a | :00:31. | :00:35. | |
beautiful name. They say their skin is as delicate as a butterfly's | :00:35. | :00:43. | |
wings. We just want them to be accepted. This is Inside Out for | :00:43. | :00:53. | |
:00:53. | :01:03. | ||
First tonight, a story you e-mailed us about, this is the problem, up | :01:03. | :01:09. | |
coastal erosion here in West Sussex. Homeowners at Pagham are fighting | :01:09. | :01:12. | |
to save their beachfront homes. This stretch of Sussex coast is | :01:12. | :01:15. | |
described by experts as one of the most naturally dynamic in the | :01:15. | :01:24. | |
country. Meaning it is changing, rapidly. This beach is at Chapel is | :01:24. | :01:28. | |
one beach, it is full of interesting plants and animals. We | :01:28. | :01:32. | |
are losing it at the rate of about six metres a year. The diggers are | :01:32. | :01:36. | |
here to try and save it. More shingle is meant to hold the waves | :01:36. | :01:46. | |
:01:46. | :01:47. | ||
back. My house's name means view of the sea. Ten years ago, we left | :01:47. | :01:50. | |
Croydon, we moved away from our family and friends to move the | :01:51. | :01:54. | |
children down here and that the dream, now the dream is not such a | :01:54. | :01:57. | |
dream, it is a nightmare. A beach can provide good protection from | :01:57. | :02:06. | |
the sea, but not if it is wearing away. I am particularly beachfront | :02:06. | :02:14. | |
property, it is getting washed away. -- potentially. I have lived here | :02:14. | :02:17. | |
for 37 years. I might not be here for very much longer if this | :02:17. | :02:23. | |
continues to be left like this. live on a knife edge here, each day, | :02:23. | :02:29. | |
we get out on one of a high tides and go to see what exactly happened. | :02:30. | :02:34. | |
We wake up in the night, having nightmares. Something has to be | :02:34. | :02:38. | |
done, urgently. What is happening here at Pagham is not a landslide | :02:38. | :02:42. | |
or crashing, falling cliffs, it is the gradual loss of pebbles from a | :02:42. | :02:45. | |
beach. But the effect is just as dramatic. It threatens a community | :02:45. | :02:53. | |
of seaside bungalows that has grown up here over 80 years. -- over 100 | :02:53. | :02:57. | |
years. When it comes to saving it, nothing here so far has provided a | :02:57. | :03:00. | |
long-lasting solution. Brian is a seasoned surfer and stand-up paddle | :03:00. | :03:06. | |
boarder. He knows the water here better than most. I have let down | :03:06. | :03:10. | |
here for many years got up I have spent a lot of time in that water, | :03:10. | :03:15. | |
on it or under it. I know how it works. At the moment, it is carving | :03:16. | :03:19. | |
are beach away drastically. Locals say the harbour mouth has been | :03:19. | :03:22. | |
silting up since 2004, and as a result, a 900 metre spit has grown, | :03:22. | :03:26. | |
meaning the sea cannot flow in and out, and shingle which should be | :03:26. | :03:29. | |
dumped on the beach ends up on the spit. The spit then redirects the | :03:29. | :03:38. | |
sea's current along the beach, Today, Arun District Council is | :03:38. | :03:42. | |
moving shingle from the far end of the beach to the most depleted part. | :03:42. | :03:45. | |
Three years ago, an even bigger shingle moving project took place, | :03:45. | :03:51. | |
costing �600,000. Locals say most of that shingle has washed away. | :03:51. | :03:55. | |
This time, it is costing �10,000, but few hold out much hope that | :03:55. | :04:05. | |
:04:05. | :04:05. | ||
this new batch will stay put either. I am not an engineer. I just know | :04:05. | :04:12. | |
my local water. I can see this getting worse. This being parked in | :04:12. | :04:17. | |
here, imagine where we are standing, it used to be a straight line down | :04:17. | :04:22. | |
towards Bognor. That is mainly over the last four or five years, it has | :04:22. | :04:30. | |
got worse. That is about six metres over a period. We have winter | :04:30. | :04:38. | |
storms coming up. Along this stretch of beach, where it hits the | :04:38. | :04:42. | |
rock, you get the swirling effects and it is eating away the beach. | :04:42. | :04:48. | |
This used to go at another 70 or 80 feet. That is how much we have lost. | :04:48. | :04:52. | |
Every time we lose more. Phil Isom has roughly 20 metres of beach | :04:52. | :04:57. | |
between him and the sea. Like the other property owners here, he says | :04:57. | :04:59. | |
he could lose everything. Seeing shingle being moved doesn't fill | :05:00. | :05:06. | |
him with confidence. This is a token effort, because until the | :05:06. | :05:11. | |
harbour mouth is reopened, as fast as they rebuild the beach, the tide | :05:11. | :05:18. | |
will sweep it away. So it is at about situation. We loved the sea, | :05:18. | :05:22. | |
but we do not want it in our property. Diana Willson wants to | :05:22. | :05:25. | |
sell up and move, and she has had no shortage of potential buyers. | :05:25. | :05:29. | |
But every time she gets an offer, a survey is done and the beach | :05:29. | :05:37. | |
erosion is revealed. I need to move, and 82. I should move on, to a | :05:37. | :05:44. | |
place where there is a bit more help, I think. They have taken my | :05:44. | :05:48. | |
house of the market now, because they say it is not saleable at the | :05:48. | :05:54. | |
moment. With the foreshore as it is. I have had quite a number or offers | :05:54. | :06:00. | |
at all of them have taken it off after finding out the details of | :06:00. | :06:03. | |
the beach. Diana thinks moving shingle around is a waste of time | :06:03. | :06:10. | |
and taxpayers' money. I do not think it will last long, because if | :06:10. | :06:14. | |
you get a storm, you will find it will go and you will find it | :06:14. | :06:20. | |
somewhere else. Everyone has got a theory as to how to stop the | :06:20. | :06:23. | |
erosion. Local parish councillor Ray Radmall has devoted much of his | :06:23. | :06:26. | |
life to solving the problem and thinks it is high time one of the | :06:26. | :06:35. | |
proposed solutions was actually carried out. The whole of the | :06:35. | :06:39. | |
frontage of Pagham is classified by the Environment -- the Environment | :06:39. | :06:43. | |
Agency as subject to erosion. If it took its natural course, you would | :06:43. | :06:47. | |
lose all the beach seafront and Idlib progress in land. It would be | :06:47. | :06:51. | |
a huge disaster. It makes common sense to try to hold the line as | :06:51. | :06:55. | |
best we can, but we do not have a hold the line policy for Pagham. We | :06:55. | :07:00. | |
have adapted management, work with nature rather than act against it. | :07:00. | :07:04. | |
This is one of the things we think we need to address again, | :07:04. | :07:08. | |
particularly when it comes to correcting the growth of that | :07:08. | :07:11. | |
shingle back that is causing the problem. Pagham Harbour is a | :07:11. | :07:15. | |
crucial habitat for wildlife. It is thought to be home to the very rare | :07:15. | :07:17. | |
Delfolin's lagoon snail. It is a pit stop for overwintering birds | :07:17. | :07:20. | |
and in the spring, little terns nest on its mudflats and salt | :07:20. | :07:24. | |
marshes. The shingle bank itself is even considered a rare natural | :07:24. | :07:30. | |
feature. As a result, there is a proposal to make the area a marine | :07:30. | :07:32. | |
conservation zone. All of which means treading very carefully when | :07:32. | :07:40. | |
it comes to building coastal defences. At Pagham Harbour, we | :07:40. | :07:45. | |
have an amazing nature site. It is a special protection area. | :07:45. | :07:50. | |
Thousands of water birds visit here. In the whole of England, there are | :07:50. | :07:55. | |
only 85 of these areas. As a nation, we have committed to protect them. | :07:55. | :08:00. | |
These are teals coming in. Probably from Russia. These flocks of waders | :08:00. | :08:07. | |
coming in and flashing white across there, they may not have mixed in | :08:07. | :08:12. | |
with them. Some grey plovers have come in. They are quite difficult | :08:12. | :08:18. | |
to see once they are down on the ground. The RSPB as over 200 nature | :08:18. | :08:22. | |
reserves in the country, all of those are part of somebody's | :08:22. | :08:26. | |
community and the people here do so because they love places like this | :08:26. | :08:29. | |
will stop at the same time for all we have a local community who have | :08:29. | :08:33. | |
a very real and pressing a distressing issue right on the | :08:33. | :08:38. | |
doorstep. For us, the key thing is that we feel there are solutions | :08:38. | :08:42. | |
that can be found here to protect the birds and protect the people, | :08:42. | :08:47. | |
but that requires court -- collaboration. Close working. The | :08:47. | :08:50. | |
earliest community here were people on holiday in makeshift homes, | :08:50. | :08:53. | |
which were never meant to be permanent. The bungalows started | :08:53. | :08:56. | |
life in the 1930s as railway carriages, converted into holiday | :08:56. | :09:01. | |
homes. So, what better way to find out how things have changed than | :09:01. | :09:04. | |
meeting someone who first came here in 1932 for holidays with his | :09:04. | :09:14. | |
grandparents? The two railway carriages, one either side, like | :09:14. | :09:21. | |
that. They used to buy them for put pounds from Southern Railway. They | :09:22. | :09:28. | |
put them up with two courses. It built roof over the top. There you | :09:28. | :09:31. | |
are, that was a bungalow. Jacomelli is 85 and has come back | :09:31. | :09:38. | |
to look for his old house before it disappears. When I was young, my | :09:38. | :09:41. | |
father would take me on his shoulders across the harbour mouth, | :09:41. | :09:46. | |
where the water goes out. When the tide was low, he would put me on | :09:46. | :09:52. | |
his shoulder. We would build rafts to go on, we had boats to go one. | :09:52. | :10:02. | |
:10:02. | :10:09. | ||
None of this was here before, it was all shingles. We arrive at his | :10:09. | :10:12. | |
old house unannounced. It says a lot about the community that we get | :10:12. | :10:16. | |
a warm welcome from current owner Tex, who has lived here since the | :10:16. | :10:24. | |
early 1980s. Bloody hell! When did you live here? During the war. They | :10:24. | :10:29. | |
used to be more beach down at the bottom. We used to play down there. | :10:29. | :10:38. | |
Come in, come in. Yes, this is as it used to be, the old Will we | :10:38. | :10:41. | |
carriage doors there. My grandmother used to sleep in that | :10:41. | :10:46. | |
bedroom. These are old railway carriage doors and my grandfather | :10:46. | :10:50. | |
put panels on. He panelled the strewn with oak panelling and he | :10:50. | :10:56. | |
took the carriage windows out of the outside. The kids used to sleep | :10:56. | :11:03. | |
in that room. The guests Slapton Barra. They still do. -- be guests | :11:03. | :11:09. | |
slept in that room. Bat carriage there is the Gaud's van. And the | :11:09. | :11:14. | |
bit that sticks out that side, and debate the other side. So the old | :11:14. | :11:17. | |
guard could look down the side of the train and make sure no one is | :11:17. | :11:25. | |
crawling along. Now we keep the guests there. But as my grandfather | :11:25. | :11:29. | |
and grandmother what the name of the house. That is the whole family | :11:29. | :11:33. | |
before the war, that is me. There is the railway carriage, the shape | :11:33. | :11:43. | |
:11:43. | :11:51. | ||
It is of real outrage to let this place go. I can remember back to | :11:51. | :11:55. | |
the Thirties and there's people here since then, it has become more | :11:55. | :12:00. | |
of the settled community now. It used to be a holiday community. To | :12:01. | :12:05. | |
lose it all would be such a shame because it is a beautiful spot, no | :12:05. | :12:14. | |
doubt about it. Ray's fears are not shared by the Environment Agency, | :12:14. | :12:20. | |
which says other places are more at risk than Pagham. It's has paid | :12:20. | :12:24. | |
thousands of pounds for studies to come up with potential solutions. | :12:24. | :12:27. | |
A lot of committees along the coast Auret risk of coastal flooding, | :12:27. | :12:32. | |
which will risk -- vary depending on the location and the defences | :12:33. | :12:37. | |
there, but given locations near as, in Littlehampton or Bognor Regis | :12:37. | :12:41. | |
saw further along the coast, where we have built new defences, many | :12:41. | :12:46. | |
aren't up to the standard this beach currently provides, so it is | :12:46. | :12:50. | |
important to put that into context. Even after the recent erosion, we | :12:50. | :12:54. | |
still had a beach over 20 metres wide here. That provides a good | :12:54. | :12:59. | |
standard of protection, and that is not belittling the erosion. I | :12:59. | :13:04. | |
understand that is of concern to the local community, but we are | :13:04. | :13:07. | |
committed to working with Arun District Council and others to | :13:07. | :13:12. | |
ensure that would be committed we manage the risk as best we can. | :13:12. | :13:15. | |
that local community is frustrated watching shingle being moved well | :13:15. | :13:20. | |
their beach continues to shrink. Back at his past Council HQ, Ray's | :13:20. | :13:25. | |
says the answer is reopening the harbour to the seat by cutting | :13:25. | :13:28. | |
through the spit. He believes this will bring shingle back onto the | :13:28. | :13:34. | |
beach naturally. Ray's plan is backed up by surveys and even an | :13:35. | :13:40. | |
Environment Agency report where coastal engineer proposed just that. | :13:40. | :13:44. | |
It is a solution which will probably get this 15-20 years of | :13:44. | :13:51. | |
free shingle coming back naturally onto the beach. We have the | :13:51. | :13:53. | |
�160,000 study commissioned by the Environment Agency a couple of | :13:53. | :13:58. | |
years ago, and here we have a conceptual model for digging the | :13:58. | :14:03. | |
Channel, so it is not a pipe dream but something that has come through | :14:03. | :14:07. | |
the various authorities plans anyway. So if cutting through they | :14:07. | :14:11. | |
spit was suggested two years ago, why hasn't it been done? Cutting a | :14:12. | :14:15. | |
channel through the spit or undertaking other modifications was | :14:15. | :14:19. | |
one of them up -- a number of options. The report concluded that | :14:19. | :14:23. | |
we couldn't say with certainty which was the right one to take at | :14:23. | :14:27. | |
the moment, and it recommended closely monitoring the situation | :14:27. | :14:31. | |
and being ready to respond with the work as and when needed. Is it a | :14:31. | :14:36. | |
waste of money, in conclusion? It has given us the confidence to | :14:36. | :14:40. | |
know what to do when the time is right. As of today, I can't say | :14:41. | :14:45. | |
which has the right bits of work to undertake. Moving forward, we need | :14:45. | :14:50. | |
to work closely with the committee, monitor what is going on, and is | :14:50. | :14:55. | |
important that we do that and use public money wisely. | :14:55. | :14:56. | |
Environment Agency and Arun District Council are working | :14:56. | :15:01. | |
together. With their resident gadget man constantly monitoring | :15:01. | :15:11. | |
:15:11. | :15:13. | ||
Be its Derek -- very blustery out there today so difficult to control. | :15:13. | :15:18. | |
10 metres above the beach. That extra height will give us a lot | :15:18. | :15:23. | |
more information. Today, coastal engineer Roger Spence there is | :15:23. | :15:27. | |
surveying the project, and it doesn't take long for residents to | :15:27. | :15:32. | |
spot them. You've got a nice start a beach in front of the now, maybe | :15:32. | :15:37. | |
not as much as you would like. We have done what we set out to do. | :15:37. | :15:41. | |
can't understand why we can't chop the spit down there outside the | :15:41. | :15:44. | |
nature reserve. It is a natural process and we need to work with | :15:44. | :15:49. | |
nature rather own against it. At the moment we believe we can manage | :15:49. | :15:52. | |
your beach with nature rather than fighting against it too much. If we | :15:52. | :15:56. | |
spent money the wrong way we would be criticised as much as not | :15:56. | :16:00. | |
spending money. It will cost a lot of money whatever we do, so we have | :16:00. | :16:04. | |
to be absolutely sure we have the right answer. Residents can only | :16:04. | :16:09. | |
wait and see if the boosted beach will stay put. Work started when | :16:09. | :16:12. | |
there was 20 metres of beach between houses and the sea. | :16:13. | :16:18. | |
Officially, at the level is now 15 metres. The estimated cost of | :16:18. | :16:24. | |
cutting a channel through the spit is half a million pounds. There is | :16:24. | :16:29. | |
another very cheap final option. If an engineering scheme is deemed too | :16:29. | :16:35. | |
expensive, the powers that be can simply do nothing. That means that | :16:35. | :16:41. | |
if it becomes no longer viable cost wise to actually keeper place | :16:41. | :16:46. | |
secure, the authorities reserved the right to walk away. They let | :16:46. | :16:56. | |
:16:56. | :16:56. | ||
Two weeks after the shingle was moved to shore up the beach at | :16:56. | :17:02. | |
Pagham, the local community is out in force. Not after a storm or | :17:02. | :17:06. | |
particularly bad weather, just the morning after the first spring tide, | :17:06. | :17:14. | |
and they have come prepared. metres. If you are generous you | :17:14. | :17:20. | |
might go to 18.1, but fundamentally, 18 metres, so that is not only the | :17:20. | :17:25. | |
shingle that was put here, a 1000 cubic metres have gone, but another | :17:25. | :17:29. | |
two metres loss on before they did the work. You can see the way | :17:29. | :17:33. | |
vegetation is falling over the edge and the fact that it is going | :17:33. | :17:36. | |
behind that groyne, which has safe guarding the rest of the beach in | :17:36. | :17:41. | |
that direction, it is undermining it. If that groyne would go it | :17:41. | :17:44. | |
would be bypassed by the current going round the back and that | :17:44. | :17:47. | |
threatens a bigger area of the beach. Erosion has been a caring | :17:47. | :17:51. | |
here for many years and will continue to in the future. We can't | :17:51. | :17:56. | |
stop it. But by its undertaking maintenance work we can lessen the | :17:56. | :18:01. | |
impact. We will have to keep undertaking maintenance work here. | :18:01. | :18:05. | |
What it will be is something we need to work out, and we will start | :18:05. | :18:08. | |
but short-lived. Everybody here knows that putting shingle on this | :18:08. | :18:12. | |
beach is no solution. The only way is to deal with the problem at | :18:12. | :18:17. | |
source, intervene and do something with this bit. I don't want to see | :18:17. | :18:21. | |
people here fretting and losing their homes. I believe it is now | :18:21. | :18:24. | |
becoming urgent that something is done and there is a government | :18:24. | :18:29. | |
intervention to ensure it happens. A as the sea edges closer to | :18:29. | :18:34. | |
people's homes, few would deny a long-term solution is needed to | :18:34. | :18:37. | |
protect residents and the seascape which brought them here in the | :18:37. | :18:42. | |
first place. Go is it fair to let nature take a houses away when it | :18:42. | :18:46. | |
can be stopped? I think there are people here within 30 metres of | :18:46. | :18:50. | |
losing their property who have a good argument to say that they can | :18:50. | :18:54. | |
do something about it and they should be -- within 13 metres. | :18:54. | :18:59. | |
came to pack can because I was here as a child on the old bucket-and- | :18:59. | :19:03. | |
spade holidays. Many people come back down the here because they | :19:03. | :19:07. | |
have that experience and want to retire. Not wealthy people by a | :19:08. | :19:12. | |
long chalk. Nice, good, open- hearted people. It is only right | :19:12. | :19:22. | |
:19:22. | :19:23. | ||
and proper we should look after We will be keeping an eye on what | :19:23. | :19:27. | |
happens here at Pagham throughout the year. Things are changing all | :19:27. | :19:33. | |
the time and at the moment we have a distance from the houses to the | :19:33. | :19:38. | |
sea off roundabout, what, 17 metres, just two metres away from the | :19:38. | :19:43. | |
critical 15 metre mark where action will be taken. Don't forget, if you | :19:43. | :19:50. | |
have a story up -- a story for us, drop as an e-mail. Next, at the | :19:50. | :19:53. | |
young daughter -- Dorset family living with a rare genetic | :19:53. | :19:57. | |
condition that has turned their lives upside down and led to some | :19:57. | :20:07. | |
:20:07. | :20:12. | ||
unwanted attention. He is their The they say their skin is as | :20:12. | :20:21. | |
delicate as a butterfly's wins. wings. It is so lovely, it makes | :20:21. | :20:27. | |
something so horrible so beautiful. I am Steph and this is Chris, my | :20:27. | :20:32. | |
fiancee and a two special children, Harry who is three and a half and | :20:32. | :20:37. | |
Cody who is one and a half. As people often stop and ask, no, our | :20:37. | :20:42. | |
kids haven't been burnt, scolded or beaten. They have a rare skin | :20:42. | :20:47. | |
disorder called EB. We wanted to make this film to make life easier | :20:47. | :20:53. | |
for us and other families with kids with EB. We see ourselves as normal | :20:53. | :20:58. | |
people living in extraordinary circumstances. Cody is 18 months, | :20:58. | :21:08. | |
:21:08. | :21:10. | ||
and he has his mum's attitudes, and Hello! Did you have a nice day at | :21:10. | :21:13. | |
school? Harry is quite chilled. Does as he | :21:13. | :21:22. | |
is told, gets on with things. a very strong-willed son, quite | :21:22. | :21:29. | |
demanding, when he wants something, he wants it. But because of the way | :21:29. | :21:33. | |
we are with him, he is quite small and he gets what we -- what he | :21:33. | :21:37. | |
wants, but we don't know how long we have him for so that's why we do | :21:37. | :21:43. | |
it. In 2009 I gave birth to Harry. I had lost baby twins in my first | :21:43. | :21:48. | |
pregnancy so it was a relief to see my healthy son. It was amazing, the | :21:48. | :21:52. | |
best feeling in the world. I can't really describe it, to be honest, | :21:53. | :21:58. | |
it was like a fairy tale, to be honest, it was, but the first few | :21:58. | :22:04. | |
weeks were really good. You are, really happy. He was born and | :22:04. | :22:09. | |
everything was fine. Took him home, everything was fine, just got on | :22:09. | :22:15. | |
like a normal family, then a round three-four weeks old, or we so he | :22:15. | :22:20. | |
had blisters coming up on his fingernails. Might mum said, what's | :22:20. | :22:24. | |
wrong with his hands? She said, look, so I came home, took him to a | :22:24. | :22:30. | |
hospital, they just got it was a normal infection under the nails. | :22:30. | :22:35. | |
The soars started to spread on to his feet, up to his face and on to | :22:35. | :22:40. | |
his body. Lifting him was hard, if you lifted under the arms you could | :22:40. | :22:44. | |
rip the skin, so it was all scooping him with blankets and | :22:44. | :22:49. | |
cushions. It wasn't normal for a baby all for us. You couldn't | :22:49. | :22:57. | |
cuddle your child. They clinically diagnosed him with EB, which is a | :22:57. | :23:02. | |
really bad, severe version of the disease, and the life expectancy, | :23:02. | :23:07. | |
they said six months to year, so it really hit home. Scary, really | :23:07. | :23:12. | |
scary. But despite the odds, Harry is still with us and enjoying life. | :23:13. | :23:15. | |
He even goes to school and bakes cakes. | :23:15. | :23:19. | |
Is it for money, just money, not for Daddy? | :23:19. | :23:24. | |
There are only 5000 people with EB in the UK, and the odds of us | :23:24. | :23:28. | |
having another child with it was unlikely, so we took the small risk | :23:28. | :23:31. | |
and had Cody. I can't describe what it was like. | :23:31. | :23:36. | |
I was so happy when he was born and he was alive, then looked at him | :23:36. | :23:40. | |
and saw his hands and I was like, oh my God, he has got it. Caring | :23:40. | :23:45. | |
for two children with EB requires a spare bedroom full of medication. | :23:45. | :23:50. | |
Both boys had to have tracheotomy is, meaning they can't speak and | :23:50. | :23:55. | |
need constant monitoring. We also need to change their bandages twice | :23:55. | :23:59. | |
a day, something none of our family looks forward to. I don't like | :23:59. | :24:03. | |
doing it. It is not really fair run him but it has to be done for him, | :24:03. | :24:09. | |
really. He is quite good, once he gets past the anxiety of having | :24:09. | :24:14. | |
them done, he is quite good, as you can see. He is that they're quite | :24:14. | :24:19. | |
happy, just lets me get on with it. Sundays are better than others and | :24:19. | :24:24. | |
luckily today he is co-operating -- some days. He is unpredictable | :24:24. | :24:30. | |
depending on how he is feeling, really. Yes, he's a good boy. He's | :24:30. | :24:34. | |
quite funny. He knows whether dressing goes so if I did something | :24:34. | :24:44. | |
:24:44. | :24:46. | ||
Good! We have the bandages changed, sometimes we are able to venture | :24:46. | :24:56. | |
:24:56. | :24:58. | ||
A You Like It? Big, isn't it? You have to put in a letter to Santa in | :24:58. | :25:02. | |
they're telling him what you want for Christmas. By it as much as we | :25:02. | :25:06. | |
try to get on with shopping, we can't help noticing the amount of | :25:06. | :25:10. | |
people that stop and say things about our kids. That lady with the | :25:10. | :25:20. | |
blue top on. She looked at them and shook their heads. It was like, no | :25:20. | :25:24. | |
need for it, really. I don't know what goes through their heads. But | :25:24. | :25:28. | |
I don't understand how people can be so cruel to children. | :25:28. | :25:32. | |
The they just stopped, turned round, started talking to each other, | :25:32. | :25:36. | |
pointed, then just stared, sci-fi like waving at them but I thought | :25:36. | :25:44. | |
I'd better not. People dread their children away from mine, and people | :25:44. | :25:47. | |
have -- laugh but the boys and I have never be used in the streets. | :25:48. | :25:51. | |
I can understand that to see a child like that you would be | :25:51. | :25:55. | |
shocked, but all we ask is that you are scarce. We are happy to talk to | :25:55. | :26:01. | |
for 20 minutes about it. -- that you ask us. The man is doing your | :26:01. | :26:11. | |
:26:11. | :26:12. | ||
picture, Harry. Looked! Who is that? A is that you? Happy New Year. | :26:12. | :26:22. | |
Your a monkey! -- you are. That is the frock. He wants the Frog now as | :26:22. | :26:32. | |
:26:32. | :26:33. | ||
well. He has got the monkey. It's By a get home, it is business as | :26:33. | :26:39. | |
usual as we get the kids ready for bed. I fixed in a while Harry has | :26:39. | :26:47. | |
some dance time. -- fix dinner. Just giving him a nebuliser, just | :26:47. | :26:54. | |
to get all the secretions out, really. The boys need looking after | :26:54. | :26:58. | |
24 hours a day, so each evening, two carers arrive so we can get | :26:58. | :27:04. | |
some rest for the night. He's seems quite itchy round his | :27:04. | :27:14. | |
:27:14. | :27:15. | ||
neck. A OK. But it's usually me he The responsibility is massive, | :27:15. | :27:18. | |
especially when they are really unwell and they have a chest | :27:18. | :27:25. | |
infection, because you are the one responsible for keeping that airway | :27:25. | :27:31. | |
open. And sometimes it's not always possible. They start blocking off, | :27:31. | :27:37. | |
and stuff, so it is a massive responsibility. We have only had to | :27:37. | :27:45. | |
resuscitate its Coady once. So far. The future is uncertain for Harry | :27:45. | :27:51. | |
and Cody, so we try to make every day and night special. I try to | :27:51. | :27:56. | |
take every day as it comes. I don't like trying to look ahead, because | :27:56. | :28:00. | |
they don't know what the future holds for us, so we just take each | :28:00. | :28:04. | |
day as it comes, and whatever the day will throw at us, we have to | :28:04. | :28:08. | |
deal with it when it comes. No point in trying to plan anything, | :28:08. | :28:13. | |
and it is a way of life for us now, and we just wants to be accepted, | :28:13. | :28:18. | |
that is all, really. Two very brave young boys there. | :28:18. | :28:23. | |
Don't forget, jaws stories really can make a difference, so why don't | :28:23. | :28:30. | |
you tell me about them? On Twitter. I will be back next week. Until | :28:30. | :28:34. | |
then, goodbye. And next time, we give Portsmouth | :28:34. | :28:39. | |
full health check-up, and comedian and GP Dr Phil Hammond takes the | :28:39. | :28:44. |