Special report: Sussex families' search for treatment unavailable on the NHS

Kate and Barry Hartin with Daniel

Oliver Poinsignon with dad Jean-Marc and mum Julie

First published in News
Last updated

Like any loving parents, Barry and Kate Hartin want nothing but the best for their children.

In their case it means taking their little boy Daniel across the Atlantic for an operation to help him move about more easily.

The Hartins are among a growing number of families finding themselves having to fundraise to get their loved ones the treatment they need because it is not available on the NHS.

Those making the decisions on whether to approve funding for operations, nationally and locally, have to juggle effectiveness, how vital it is, the cost of the treatment and how successful it is likely to be.

With such huge demands on the NHS budget, there are times when difficult decisions have to be made, and families find themselves having to look elsewhere.

Daniel Hartin, from Haywards Heath, and his twin sister Alice, were born three months prematurely in May 2011 at the Royal Sussex County Hospital in Brighton.

Alice recovered well but Daniel was diagnosed with cerebral palsy, meaning he has suffered irreparable damage to some of his brain and he is unable to walk or stand unaided.

The situation for the youngster will only get worse as his muscles will tighten as he gets older and he will eventually end up in a wheelchair.

His best hope is an operation called a selective dorsal rhizotomy (SDR), which is still relatively rare in this country and not routinely available on the NHS.

It involves loosening the spasticity of the muscles to make it easier for the youngster to walk and run as he continues to grow Mrs Hartin, 39, said: “Time is really of the essence here. The earlier the operation can be done, the greater the chances of its success.

“At the moment, they are not funding the operation routinely and even if you find the money, it can take a very long time to get on the list to have the operation done in England as there are not many places that do it.

“This is why we are looking abroad at Missouri in the US.

“Daniel is such a happy little chap but he is already starting to get frustrated because there are times when he cannot keep up with his sister.

“We want to give him all the help and support he needs but it needs to be done quickly and it will be expensive.

“As well as the surgery, there is all the follow up care and treatment he will need and so we have a lot of fundraising to do.

“It is a pity that we have to take this route but we are trying to be positive about it all. Hopefully our campaign will help educate people about cerebral palsy and we have also had our eyes opened to how generous and supportive people can be.

“The kindness of strangers has been amazing already. We want Daniel to grow up to be an important part of the community.”

The Hartins, who also have another son George, 11, are hoping to book an operation for the end of July or early August, and are aiming to raise more than £60,000 to cover the cost of surgery, travel and follow-up care.

They have raised nearly £9,000 but need to reach at least £30,000 before the operation can go ahead.

Mrs Hartin said: “Daniel has standing equipment to help him interact with his sister and playgroup friends at the same eye level for his development.

“The fact he can’t walk, doesn’t end there. It means his educational and emotional wellbeing is at stake.

“The twins are starting pre-school this September, and it means so much for us to get Daniel on a ‘level footing’ with this sister as far as social interaction is concerned.

“Although the NHS is evaluating the viability of this treatment, I simply want to know what it is they are deliberating on.

“There are thousands of other people, globally, who have had this procedure, children and adults alike, and not one of them that I know about has regretted the decision.

“The choice to me seems simple, if you are a candidate for the surgery, then you will see a positive life-changing outcome. In short you walk, or you don’t.”

One family who know all too well the importance of operations like SDR are the family of five-year-old Oliver Poinsignon.

The youngster, who lives in Steyning with his mother Julie Langmaid, eventually had his SDR surgery at Great Ormond Street Hospital in February following a successful fundraising campaign.

The campaign, backed by The Argus, hit its £52,000 target at the beginning of March, of months of hard work, support and help from family, friends, businesses, charities and individuals across Sussex.

Ms Langmaid and Oliver’s dad, Jean Marc, from Brighton, were another family to find themselves up against red tape when they discovered the operation that could help Oliver, who also has cerebral palsy, was not going to be covered by the NHS.

The youngster is now recovering well from surgery but faces a long process of physiotherapy and support, which also needs to be paid for.

A spokesman for NHS England (Sussex and Surrey), which is responsible for commissioning and approving specialist operations like SDR, said: “We sympathise with families who feel they may benefit from this treatment.

“However selective dorsal rhizotomy (SDR) is not routinely funded by the NHS as the current evidence base does not yet demonstrate sufficient clinical and cost effectiveness for its routine use.

“However, it has been identified by clinicians and patient representatives as showing significant ‘promise’ as a potential treatment option for the future and forms part of the Commissioning through Evaluation programme.

“The commissioning through Evaluation programme, which was originally developed with clinicians treating heart conditions, will enable SDR, and other appropriate services and/or treatments, to be funded within defined parameters, in a small number of participating centres, and within an explicit evaluation programme. Working with patients and lead clinicians, this will give us more information to help determine whether SDR should be made available in the future.”

The issue of funding and red tape has also been highlighted by a mother from East Grinstead, whose seven-year-old child has a rare, muscle-wasting condition.

Benedict McAlister was born with Ullrich congenital muscular dystrophy, for which there is no cure.

His mother Justine and dad Bruce will have to watch as their boy’s muscles continue to weaken over time.

Frustratingly, scientists are in the very early stages of developing a drug that could potentially stop the process of degeneration.

However red tape is likely to slow the research down, which means they are still a long way off from bringing the drug to the clinical trials stage.

The drugs are also likely to be very expensive, sparking more concerns that health bodies may refuse to fund them.

Mrs McAlister said she had been left “frustrated” that plans by NHS England do not highlight how the health service will plan ahead to fund future high-cost treatments for the condition and other rare diseases.

In September last year Justine gave evidence for a parliamentary inquiry on how her family is enduring an agonising wait for a treatment for Ullrich muscular dystrophy.

The findings were published in a hard-hitting report, compiled by the All Party Parliamentary Group (APPG) for Muscular Dystrophy and backed by the Muscular Dystrophy Campaign.

It revealed that while clinical trials are taking place into potential treatments for many forms of muscular dystrophy, families fear that as more cutting-edge therapies for rare conditions emerge, convoluted drug assessment processes, funding issues and lack of specialist care could delay – or even prevent entirely – cutting-edge therapies from reaching children and young people.

MPs involved in the inquiry raised particular concerns over funds after a special budget for treating rare conditions in England was merged into the overall NHS budget in 2013.

Mrs McAlister said: “Benedict is gradually realising that there is something different about him.

“As a parent this is heart-breaking to watch. Scientists are now developing a promising technology that could potentially lead to a treatment for my son’s condition.

“So much hope rests on treatments like this. It’s deeply disappointing and worrying to hear that the NHS England has given no mention to funding for rare disease treatments.

“As more and more pioneering treatments come forward, we and other families are becoming increasingly concerned about whether the system here will be fit to deliver them.

“Urgent action is needed now, so that not a day is lost before these medications reach our children.”

Robert Meadowcroft, chief executive of the Muscular Dystrophy Campaign, said: “We are gravely concerned that failure to plan ahead and lack of funding will delay cutting-edge genetic therapies from reaching children and young people with life-shortening conditions like Ullrich muscular dystrophy.

“Ground-breaking potential genetic therapies are on the horizon and with increased EU support, this pipeline is only set to grow. We need to see funding for treatments and the specialist healthcare needed to deliver them on the NHS’s agenda.”

A spokesman for NHS England said: “Since 1 April 2013, all services included within |The Manual for Prescribed Specialised Services are commissioned directly by NHS England.

“Services provided by adult neurosciences or neurology centres are included in the manual and will be governed by NHS England’s national service specifications.

“However, other non-specialised elements of the care pathway for patients with neuromuscular diseases (NMDs) are commissioned by local clinical commissioning groups (CCGs), in response to the needs of local patients in their communities.

“In the case of this condition, (muscular dystrophy, children may need scoliosis surgery which is NHS England but also lots of physiotherapy which would be commissioned by CCGs.”

Comments (11)

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11:31am Tue 11 Mar 14

mimseycal says...

I have a son who died when he was 9 months old. He had a rare genetic condition that meant that he would need a lot of medical intervention and even then there was no guarantee that he would not need more as time went by. The long term prognosis was that he would in all likelihood end up spending more and more time undergoing medical treatment.
I took him home. We had a wonderful lifetime together and I treasure every moment that we shared. I wish that all I had to face is that he might not have walked. That the worst he and his siblings faced is that they had different physical challenges. Instead his siblings grew up knowing about him rather then knowing him.

There is nothing inherently wrong in being physically challenged in and of itself. Perhaps we should be more willing to celebrate our children for what they are rather then worry about what they are not.

Having said that, I wish you all good fortune in your endeavours to fund-raise.
I have a son who died when he was 9 months old. He had a rare genetic condition that meant that he would need a lot of medical intervention and even then there was no guarantee that he would not need more as time went by. The long term prognosis was that he would in all likelihood end up spending more and more time undergoing medical treatment. I took him home. We had a wonderful lifetime together and I treasure every moment that we shared. I wish that all I had to face is that he might not have walked. That the worst he and his siblings faced is that they had different physical challenges. Instead his siblings grew up knowing about him rather then knowing him. There is nothing inherently wrong in being physically challenged in and of itself. Perhaps we should be more willing to celebrate our children for what they are rather then worry about what they are not. Having said that, I wish you all good fortune in your endeavours to fund-raise. mimseycal
  • Score: 1

12:09pm Tue 11 Mar 14

Durango_Splubb says...

Not so long ago OUR NHS was recognised the world over as the home of pioneering medicine but the regiments of "managers" and the privatising vandalism of this lib-dem-con party are rapidly turning it into a few struggling 'First Aid posts'.
Not so long ago OUR NHS was recognised the world over as the home of pioneering medicine but the regiments of "managers" and the privatising vandalism of this lib-dem-con party are rapidly turning it into a few struggling 'First Aid posts'. Durango_Splubb
  • Score: 2

2:32pm Tue 11 Mar 14

b-dazzler says...

Great Article, Wonderful Cause...shame they neglected to add in the most inportant information!! if you would like to help Dan's Appeal and follow more of his personal story then please visit www.justgiving.com/o
nesmallstepfordan :)
Great Article, Wonderful Cause...shame they neglected to add in the most inportant information!! if you would like to help Dan's Appeal and follow more of his personal story then please visit www.justgiving.com/o nesmallstepfordan :) b-dazzler
  • Score: 5

2:38pm Tue 11 Mar 14

getThisCoalitionOut says...

It's a very sad state of affairs when surgery like these children need is not available on the NHS - it should be. We need to stop all the privatisation of the NHS - it must not be allowed to become a profit first organisation which is what our current government is doing and it's shameful. Our PM is a traitor.
It's a very sad state of affairs when surgery like these children need is not available on the NHS - it should be. We need to stop all the privatisation of the NHS - it must not be allowed to become a profit first organisation which is what our current government is doing and it's shameful. Our PM is a traitor. getThisCoalitionOut
  • Score: 0

2:41pm Tue 11 Mar 14

b-dazzler says...

mimseycal wrote:
I have a son who died when he was 9 months old. He had a rare genetic condition that meant that he would need a lot of medical intervention and even then there was no guarantee that he would not need more as time went by. The long term prognosis was that he would in all likelihood end up spending more and more time undergoing medical treatment. I took him home. We had a wonderful lifetime together and I treasure every moment that we shared. I wish that all I had to face is that he might not have walked. That the worst he and his siblings faced is that they had different physical challenges. Instead his siblings grew up knowing about him rather then knowing him. There is nothing inherently wrong in being physically challenged in and of itself. Perhaps we should be more willing to celebrate our children for what they are rather then worry about what they are not. Having said that, I wish you all good fortune in your endeavours to fund-raise.
I think that is incredibly rude!! I am sorry for your loss and for the fact your children did not know their sibling but to insinuate that Daniels life is not celebrated because his parents are striving to give him the best life possible is both ludicrous and appalling. Might I share with you one of my favourite quotes... 'if you have nothing nice to say (or positive to offer) then don't say anything at all' with that said, I hope you have a lovely day :)
[quote][p][bold]mimseycal[/bold] wrote: I have a son who died when he was 9 months old. He had a rare genetic condition that meant that he would need a lot of medical intervention and even then there was no guarantee that he would not need more as time went by. The long term prognosis was that he would in all likelihood end up spending more and more time undergoing medical treatment. I took him home. We had a wonderful lifetime together and I treasure every moment that we shared. I wish that all I had to face is that he might not have walked. That the worst he and his siblings faced is that they had different physical challenges. Instead his siblings grew up knowing about him rather then knowing him. There is nothing inherently wrong in being physically challenged in and of itself. Perhaps we should be more willing to celebrate our children for what they are rather then worry about what they are not. Having said that, I wish you all good fortune in your endeavours to fund-raise.[/p][/quote]I think that is incredibly rude!! I am sorry for your loss and for the fact your children did not know their sibling but to insinuate that Daniels life is not celebrated because his parents are striving to give him the best life possible is both ludicrous and appalling. Might I share with you one of my favourite quotes... 'if you have nothing nice to say (or positive to offer) then don't say anything at all' with that said, I hope you have a lovely day :) b-dazzler
  • Score: -1

2:43pm Tue 11 Mar 14

Durango_Splubb says...

Is there any way to make a donation without 'joining' anything like the monstrous google vultures?
Is there any way to make a donation without 'joining' anything like the monstrous google vultures? Durango_Splubb
  • Score: 0

3:15pm Tue 11 Mar 14

mimseycal says...

b-dazzler wrote:
mimseycal wrote:
I have a son who died when he was 9 months old. He had a rare genetic condition that meant that he would need a lot of medical intervention and even then there was no guarantee that he would not need more as time went by. The long term prognosis was that he would in all likelihood end up spending more and more time undergoing medical treatment. I took him home. We had a wonderful lifetime together and I treasure every moment that we shared. I wish that all I had to face is that he might not have walked. That the worst he and his siblings faced is that they had different physical challenges. Instead his siblings grew up knowing about him rather then knowing him. There is nothing inherently wrong in being physically challenged in and of itself. Perhaps we should be more willing to celebrate our children for what they are rather then worry about what they are not. Having said that, I wish you all good fortune in your endeavours to fund-raise.
I think that is incredibly rude!! I am sorry for your loss and for the fact your children did not know their sibling but to insinuate that Daniels life is not celebrated because his parents are striving to give him the best life possible is both ludicrous and appalling. Might I share with you one of my favourite quotes... 'if you have nothing nice to say (or positive to offer) then don't say anything at all' with that said, I hope you have a lovely day :)
Rude? It wasn't intended to be. The point I tried to get across is that we are acting as if physical, and yes mental, perfection is the only state to be desired. As if accepting that your child might be physically challenged means you are settling for less ... disabled children grow up into disabled adults. It may surprise some, but disabled adults, and yes in their own way disabled children can be a positive force in society. A different positive force maybe but a positive force nonetheless.

The reason the NHS has been such an easy target for politicians is that it was originally set up without taking into account the enormous medical advances that have been made since WWII, No one could have anticipated the demand that these increasing medical advances would make on its resources.

I take no issue with these parents, and parents like them, trying to raise funds to address the complications their childrens' anormal (and yes, I intentionally avoid the term 'abnormal) development may cause I cannot help but wonder whether this is because we cannot celebrate a child for being a child regardless of them not being quite what we bargained for when we first found out we were to have a baby.

I also think that we need to realise that any health organisation, and the NHS is no exception there, is always going to be falling short between the possible and the available.
[quote][p][bold]b-dazzler[/bold] wrote: [quote][p][bold]mimseycal[/bold] wrote: I have a son who died when he was 9 months old. He had a rare genetic condition that meant that he would need a lot of medical intervention and even then there was no guarantee that he would not need more as time went by. The long term prognosis was that he would in all likelihood end up spending more and more time undergoing medical treatment. I took him home. We had a wonderful lifetime together and I treasure every moment that we shared. I wish that all I had to face is that he might not have walked. That the worst he and his siblings faced is that they had different physical challenges. Instead his siblings grew up knowing about him rather then knowing him. There is nothing inherently wrong in being physically challenged in and of itself. Perhaps we should be more willing to celebrate our children for what they are rather then worry about what they are not. Having said that, I wish you all good fortune in your endeavours to fund-raise.[/p][/quote]I think that is incredibly rude!! I am sorry for your loss and for the fact your children did not know their sibling but to insinuate that Daniels life is not celebrated because his parents are striving to give him the best life possible is both ludicrous and appalling. Might I share with you one of my favourite quotes... 'if you have nothing nice to say (or positive to offer) then don't say anything at all' with that said, I hope you have a lovely day :)[/p][/quote]Rude? It wasn't intended to be. The point I tried to get across is that we are acting as if physical, and yes mental, perfection is the only state to be desired. As if accepting that your child might be physically challenged means you are settling for less ... disabled children grow up into disabled adults. It may surprise some, but disabled adults, and yes in their own way disabled children can be a positive force in society. A different positive force maybe but a positive force nonetheless. The reason the NHS has been such an easy target for politicians is that it was originally set up without taking into account the enormous medical advances that have been made since WWII, No one could have anticipated the demand that these increasing medical advances would make on its resources. I take no issue with these parents, and parents like them, trying to raise funds to address the complications their childrens' anormal (and yes, I intentionally avoid the term 'abnormal) development may cause I cannot help but wonder whether this is because we cannot celebrate a child for being a child regardless of them not being quite what we bargained for when we first found out we were to have a baby. I also think that we need to realise that any health organisation, and the NHS is no exception there, is always going to be falling short between the possible and the available. mimseycal
  • Score: 2

3:21pm Tue 11 Mar 14

KobeHerdsen says...

Durango_Splubb wrote:
Is there any way to make a donation without 'joining' anything like the monstrous google vultures?
Yes Durango_Splubb.
Dan's page is www.justgiving.com/o
nesmallstepfordan. Thank you! :)
[quote][p][bold]Durango_Splubb[/bold] wrote: Is there any way to make a donation without 'joining' anything like the monstrous google vultures?[/p][/quote]Yes Durango_Splubb. Dan's page is www.justgiving.com/o nesmallstepfordan. Thank you! :) KobeHerdsen
  • Score: 0

3:58pm Tue 11 Mar 14

SmithyH1978 says...

I have two disabled children. One will never walk as the ability for him to do so neuro wise is just not there. But if there was a chance he would with the help of medical science and possibly improve his life, would I ? Heck yes, in a heartbeat. It doesn't mean I don't celebrate him or love him as the perfect being he is. It means as his mother i would be striving to give him every chance to reach his full potential. I think parents who try to move heaven and earth to achieve this for their children need commending. I celebrate my two children daily but if there was a chance I could give them more and to achieve more, i would grab it with both hands. It has nothing to do with how much I loved them just as they are. Good luck Hartin family xxx
I have two disabled children. One will never walk as the ability for him to do so neuro wise is just not there. But if there was a chance he would with the help of medical science and possibly improve his life, would I ? Heck yes, in a heartbeat. It doesn't mean I don't celebrate him or love him as the perfect being he is. It means as his mother i would be striving to give him every chance to reach his full potential. I think parents who try to move heaven and earth to achieve this for their children need commending. I celebrate my two children daily but if there was a chance I could give them more and to achieve more, i would grab it with both hands. It has nothing to do with how much I loved them just as they are. Good luck Hartin family xxx SmithyH1978
  • Score: 4

4:26pm Tue 11 Mar 14

mimseycal says...

SmithyH1978 wrote:
I have two disabled children. One will never walk as the ability for him to do so neuro wise is just not there. But if there was a chance he would with the help of medical science and possibly improve his life, would I ? Heck yes, in a heartbeat. It doesn't mean I don't celebrate him or love him as the perfect being he is. It means as his mother i would be striving to give him every chance to reach his full potential. I think parents who try to move heaven and earth to achieve this for their children need commending. I celebrate my two children daily but if there was a chance I could give them more and to achieve more, i would grab it with both hands. It has nothing to do with how much I loved them just as they are. Good luck Hartin family xxx
Fair enough. But again, I may not have made myself clear. I am not questioning the love people have for their children ... I am questioning the cause behind us seeing nothing incongruous by holding that a normally developed as opposed to an anormal developed child will achieve more or that an anormal child does not have a valid and desirable potential to attain, which can be just as full, though in a different way, from the normal child.
[quote][p][bold]SmithyH1978[/bold] wrote: I have two disabled children. One will never walk as the ability for him to do so neuro wise is just not there. But if there was a chance he would with the help of medical science and possibly improve his life, would I ? Heck yes, in a heartbeat. It doesn't mean I don't celebrate him or love him as the perfect being he is. It means as his mother i would be striving to give him every chance to reach his full potential. I think parents who try to move heaven and earth to achieve this for their children need commending. I celebrate my two children daily but if there was a chance I could give them more and to achieve more, i would grab it with both hands. It has nothing to do with how much I loved them just as they are. Good luck Hartin family xxx[/p][/quote]Fair enough. But again, I may not have made myself clear. I am not questioning the love people have for their children ... I am questioning the cause behind us seeing nothing incongruous by holding that a normally developed as opposed to an anormal developed child will achieve more or that an anormal child does not have a valid and desirable potential to attain, which can be just as full, though in a different way, from the normal child. mimseycal
  • Score: 2

4:36pm Tue 11 Mar 14

b-dazzler says...

mimseycal wrote:
b-dazzler wrote:
mimseycal wrote: I have a son who died when he was 9 months old. He had a rare genetic condition that meant that he would need a lot of medical intervention and even then there was no guarantee that he would not need more as time went by. The long term prognosis was that he would in all likelihood end up spending more and more time undergoing medical treatment. I took him home. We had a wonderful lifetime together and I treasure every moment that we shared. I wish that all I had to face is that he might not have walked. That the worst he and his siblings faced is that they had different physical challenges. Instead his siblings grew up knowing about him rather then knowing him. There is nothing inherently wrong in being physically challenged in and of itself. Perhaps we should be more willing to celebrate our children for what they are rather then worry about what they are not. Having said that, I wish you all good fortune in your endeavours to fund-raise.
I think that is incredibly rude!! I am sorry for your loss and for the fact your children did not know their sibling but to insinuate that Daniels life is not celebrated because his parents are striving to give him the best life possible is both ludicrous and appalling. Might I share with you one of my favourite quotes... 'if you have nothing nice to say (or positive to offer) then don't say anything at all' with that said, I hope you have a lovely day :)
Rude? It wasn't intended to be. The point I tried to get across is that we are acting as if physical, and yes mental, perfection is the only state to be desired. As if accepting that your child might be physically challenged means you are settling for less ... disabled children grow up into disabled adults. It may surprise some, but disabled adults, and yes in their own way disabled children can be a positive force in society. A different positive force maybe but a positive force nonetheless. The reason the NHS has been such an easy target for politicians is that it was originally set up without taking into account the enormous medical advances that have been made since WWII, No one could have anticipated the demand that these increasing medical advances would make on its resources. I take no issue with these parents, and parents like them, trying to raise funds to address the complications their childrens' anormal (and yes, I intentionally avoid the term 'abnormal) development may cause I cannot help but wonder whether this is because we cannot celebrate a child for being a child regardless of them not being quite what we bargained for when we first found out we were to have a baby. I also think that we need to realise that any health organisation, and the NHS is no exception there, is always going to be falling short between the possible and the available.
I uderstood your point entirely... my response to that would be pretty much what SmithyH1978 says above, I would also add at no point has anyone 'acted' or stated that 'physical, and yes mental, perfection is the only state to be desired', I treat no child or adult as if they are imperfect whether they have autism, depression, cerebral palsy, mental illness or anything else, they are who they are regardless of their state of health. Giving your child, parent, friend or loved one the best possible chance for improved quality of life does not mean you are not accepting them for who they are, it means you are doing everything in your power to enable them to live their lives to the fullest, something any decent parent would do.

I have no intention to continue a dispute with you as this is neither the time or place for it. This article was printed to raise awareness and hopefully additional funds to support Dan's Appeal and improve his quality of life. Only positive, supportive posts really need apply. So please respond if you feel you must but I won't reply, I do accept your statement that you never intended to be rude and will leave it there. Good day to you.
[quote][p][bold]mimseycal[/bold] wrote: [quote][p][bold]b-dazzler[/bold] wrote: [quote][p][bold]mimseycal[/bold] wrote: I have a son who died when he was 9 months old. He had a rare genetic condition that meant that he would need a lot of medical intervention and even then there was no guarantee that he would not need more as time went by. The long term prognosis was that he would in all likelihood end up spending more and more time undergoing medical treatment. I took him home. We had a wonderful lifetime together and I treasure every moment that we shared. I wish that all I had to face is that he might not have walked. That the worst he and his siblings faced is that they had different physical challenges. Instead his siblings grew up knowing about him rather then knowing him. There is nothing inherently wrong in being physically challenged in and of itself. Perhaps we should be more willing to celebrate our children for what they are rather then worry about what they are not. Having said that, I wish you all good fortune in your endeavours to fund-raise.[/p][/quote]I think that is incredibly rude!! I am sorry for your loss and for the fact your children did not know their sibling but to insinuate that Daniels life is not celebrated because his parents are striving to give him the best life possible is both ludicrous and appalling. Might I share with you one of my favourite quotes... 'if you have nothing nice to say (or positive to offer) then don't say anything at all' with that said, I hope you have a lovely day :)[/p][/quote]Rude? It wasn't intended to be. The point I tried to get across is that we are acting as if physical, and yes mental, perfection is the only state to be desired. As if accepting that your child might be physically challenged means you are settling for less ... disabled children grow up into disabled adults. It may surprise some, but disabled adults, and yes in their own way disabled children can be a positive force in society. A different positive force maybe but a positive force nonetheless. The reason the NHS has been such an easy target for politicians is that it was originally set up without taking into account the enormous medical advances that have been made since WWII, No one could have anticipated the demand that these increasing medical advances would make on its resources. I take no issue with these parents, and parents like them, trying to raise funds to address the complications their childrens' anormal (and yes, I intentionally avoid the term 'abnormal) development may cause I cannot help but wonder whether this is because we cannot celebrate a child for being a child regardless of them not being quite what we bargained for when we first found out we were to have a baby. I also think that we need to realise that any health organisation, and the NHS is no exception there, is always going to be falling short between the possible and the available.[/p][/quote]I uderstood your point entirely... my response to that would be pretty much what SmithyH1978 says above, I would also add at no point has anyone 'acted' or stated that 'physical, and yes mental, perfection is the only state to be desired', I treat no child or adult as if they are imperfect whether they have autism, depression, cerebral palsy, mental illness or anything else, they are who they are regardless of their state of health. Giving your child, parent, friend or loved one the best possible chance for improved quality of life does not mean you are not accepting them for who they are, it means you are doing everything in your power to enable them to live their lives to the fullest, something any decent parent would do. I have no intention to continue a dispute with you as this is neither the time or place for it. This article was printed to raise awareness and hopefully additional funds to support Dan's Appeal and improve his quality of life. Only positive, supportive posts really need apply. So please respond if you feel you must but I won't reply, I do accept your statement that you never intended to be rude and will leave it there. Good day to you. b-dazzler
  • Score: 0

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