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Old 29-May-2017, 21:58
MegaTsunami MegaTsunami is offline
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Lightbulb Long time I visited these shores, now I seek help...

Hi, it's been a long, long time since I've been on this forum, but have been a member here since way back in May 2001 (Only mentioning that so people don't think I'm some newbie who has signed up just to beg).

I'm posting this because my other half gave birth to our beautiful baby boy last September (after a very traumatic start to his life), and skip forward 8 months, well we find ourselves needing to raise 2,000 to fund a special helmet to treat his severe *Plagiocephaly. (It took many trips to our local GP's and a hospital Paediatrician to get this diagnosis, when every month counts with skull growth). There is no way we can find this money ourselves, so have set up a fundraising page where people will hopefully kindly donate towards this very expensive treatment cost. The helmets are uniquely made for each baby after precise skull measurements are taken, and this treatment is NOT available on the NHS - but this is something we must do for our son.

If left untreated, he will have a permanently mis-shaped head, would not be able to wear glasses if he needed them in later life due to the misalignment of his ears and skull plates and wouldn't be able to wear a cycle helmet either in later life due to his skull's formation. If you have wonky teeth, you can have a brace fitted to straighten them, but if it's your precious baby's skull - you have to pay for a helmet yourself. Anyway, I am posting on here to please see if any of my fellow The Scream! forum posters can either please re-tweet our fundraising page or maybe even donate whatever you can please, to help us to afford to buy this plagiocephaly helmet.

The NHS and all the Doctor's we have seen just say it's cosmetic and they don't provide helmet treatment, and also the insulting "his hair will cover it when he's older" (a common response said to other parents of babies suffering with plagiocephaly), which is not helpful in any way - plus male pattern baldness runs in my family and if he's anything like his daddy, he'll be going thin at just 18 years old.

I commute to and work in Manchester City Centre everyday from Rochdale, and have done for the last 4 1/2 years and go through Manchester Victoria train station twice a day and past the steps where the Manchester Arena atrocity took place, so I know to some, asking for donations when this major tragedy has happened is insensitive, but we are in genuine need of this to be able to afford his treatment. The deposit alone is 600 and we are nowhere near reaching that amount, despite posting on Twitter. I have even signed up to Facebook so people will hopefully see our fundraising page - but we aren't big fans of social media and don't really even understand Facebook or how it works to be honest. To make matters worse we don't have big families or a large circle of friends either which hinders spreading the word.

So, I'm just asking if people could either please reshare (or is it "like" our page?), retweet the link or maybe even spare 1 or two.

We have been very fortunate in that some amazing, incredibly kind people out there have donated a total of 100 so far.

If anyone would like to help, please do so. All donations will be really appreciated. Thank you.

Please donate > https://www.gofundme.com/ourbabyhelmetfund

Re-tweet > https://twitter.com/_IsThisReallyIt/...71528589172737

Yours genuinely,

Andy aka longstanding The Scream! forum member Mega Tsunami.

*Plagiocephaly = https://en.wikipedia.org/wiki/Plagiocephaly
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  #2  
Old 31-May-2017, 19:58
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Twinkle Twinkle is offline
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Default Re: Long time I visited these shores, now I seek help...

Shared for you Mega, I do so hope your baby gets its new helmet. x
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Old 01-June-2017, 22:23
MegaTsunami MegaTsunami is offline
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Default Re: Long time I visited these shores, now I seek help...

Hi,

Thank you Twinkle.

That is very much appreciated x
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Old 02-June-2017, 09:26
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Twinkle Twinkle is offline
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Default Re: Long time I visited these shores, now I seek help...

Your most welcome. Best wishes.
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Old 03-June-2017, 23:05
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Worldlife Worldlife is offline
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Default Re: Long time I visited these shores, now I seek help...

Mega congratulations to you and your partner on the birth of your son last September.

It is so difficult today to know if treatment is being denied because of budget cuts or if a treatment proposed is not as effective as it may seem.

Your link to Wiki gives the following information:-

************************************************** ***********

Repositioning[edit]
Initially, treatment usually takes the form of reducing the pressure on the affected area through repositioning of the baby onto their abdomen for extended periods of time throughout the day.[12]

This may include repositioning the child's head throughout the day so that the rounded side of the head is placed dependent against the mattress, repositioning cribs and other areas that infants spend time in so that they will have to look in a different direction to see their parents, or others in the room, repositioning mobiles and other toys for similar reasons, and avoiding extended time sleeping in car-seats (when not in a vehicle), bouncy seats, or other supine seating which is thought to exacerbate the problem. If the child appears to have discomfort or cries when they are repositioned, they may have a problem with the neck.[13]

Helmets[edit]
High quality evidence is lacking for cranial remolding orthosis (baby helmet) for the positional condition and use for this purpose is controversial.[14] If conservative treatment is unsuccessful helmets may help to correct abnormal head shapes. These helmets are used to treat deformational plagiocephaly, brachycephaly, scaphocephaly and other head shape deformities in infants 3–18 months of age by gently allowing the head shape to grow back into a normal shape. This type of treatment has been used for severe deformations.[12]

************************************************** ********

Has a repositioning treatment been tried and been a failure?

We all hope for a perfect child but having regard to this being assessed as a cosmetic problem I am wondering if there is any possibility that you may be seeing the imperfection as worse than it actually is?

At the moment I am campaigning to ensure that the NHS is properly funded to carry essential emergency and surgical treatments and all patients should receive the care they need promptly and not feel they are being denied treatment on grounds of cost.

Wishing you every success for your campaign to raise private funds.
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Old 12-September-2017, 23:21
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Behemoth Behemoth is offline
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Default Re: Long time I visited these shores, now I seek help...

Only just seen this today, I have made a small donation also
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