Belfast Telegraph

Family of mum with incurable condition in fundraising bid to help ease her agony

Amanda McTaggart in a rare pain-free moment
Amanda McTaggart in a rare pain-free moment
Amanda McTaggart in distress
Donna Deeney

By Donna Deeney

A Co Armagh woman is among only a handful of people in the UK living with an incurable genetic condition that could cause internal 'decapitation' at any time.

Amanda McTaggart from Mullaghbawn suffers from a rare genetic connective tissue disorder called Ehlers-Danlos syndrome.

It affects her entire body, especially her joints, which all dislocate daily causing extreme pain and discomfort.

It is a progressive condition with no cure or specific treatment. It affects all her vital organs and weakens her blood vessels to such an extent they could rupture at any time.

Doctors treating Ms McTaggart have already confirmed she suffers from atlantoaxial and craniocervical instability, meaning she is at risk of internal 'decapitation' if certain joints dislocate.

Ms McTaggart's pain and discomfort are further exacerbated by a number of other health conditions including mast cell activation syndrome which has resulted in her developing a long list of life-threatening allergies.

Among the substances Ms McTaggart has developed an allergy to is morphine, which complicated her care after she was rushed to hospital in January when her neck became unstable.

Ms McTaggart is now on a cocktail of medication to help her which includes 36 oral tablets per day and four syringes of liquid pain relief, but doctors have warned that as her condition worsens, she will soon run out of medication options.

With NHS funding only available for part of Ms McTaggart's treatment, and few professionals medically qualified to treat her, Ms McTaggart's family recently launched an online fundraiser to cover costs.

To date, it has smashed through its £5,000 target and now stands at over £12,000.

This money will be used to cover the costs of visits to a specialist in London, although if Ms McTaggart needs life-saving surgery for her neck, the family will need to raise more than £100,000.

A family member appealed to the public to assist them in getting Ms McTaggart the medical care she needs, saying: "I'm sure you can all understand that we as a family want and need to help Amanda as much as possible. Amanda has a beautiful wee four-year-old boy that she's not fit to look after on her own at the minute. This is our aim and the aim for Amanda to be able to enjoy seeing her beautiful wee man Ethan growing up.

"The specialist doctor confirmed atlantoaxial instability and craniocervical instability. We found out on Friday, January 25, what the results were and what the next step is regarding surgery and treatment as this condition can be fatal with any wrong movement of her neck.

"We had found a private physio here in Ireland, who we thought could help Amanda, but they are now saying they are not specialist enough to deal with her case and can't treat her.

"Amanda now has to go back to London for another urgent scan and then to see her specialist straight after it. This is combined with his team of specialist neurosurgeons and physios."

Unfortunately none of these appointments are NHS funded and Ms McTaggart's family is hoping to raise as much as possible to help fund the next trip to London.

"Dr Hakim has basically asked Amanda to come as soon as she can. This is fully depending on funding now," her family said.

"If the level of internal decapitation of the top neck joint is bad enough not to be managed with her neck brace and specialist physio alone, Amanda is looking at major surgery.

"This spinal neck fusion is only undertaken by two surgeons in the world, one in America and the second in Spain.

"This surgery alone is £100,000. So the amount needed may change after this trip.

"As a family we can't thank you all enough for all your help in helping us get Amanda to where she needs to be. Which is healthy and with her little man."

To contribute to the fun, visit gofundme.com/action-4-amanda

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