Action 4 Amanda



Amanda has a rare genetic connective tissue disorder called Ehlers-Danlos Syndrome. This is a progressive condition with no current cure or specific treatment. Here is a picture of her with her little boy before she got this ill.

It affects her entire body including her joints which all dislocate daily and cause extreme pain and discomfort. All her vital organs are affected and her blood vessels are weakened due to this disorder and could rupture at any time. She is under a private specialist based in London as he is the only one who knows about the condition and how to help her. Amanda uses a wheelchair mostly along with rollators and crutches depending on her ability at that time.

There is no funding available on the NHS for any of this.

She also has many other condtitions including Mast Cell Activation Syndrome leaving her with a long list of life threatening allergies. This list and the severity of the reactions are growing daily. Currently she relies on a carbon filter mask to help lessen the amount of triggers entering her body. She has multiple hernias and prolapses and sturggles to swallow as cricopharangeal spasms make this difficult as the muscles don't coordinate as they should.

The most recent events for Amanda were being blue lighted to hospital by ambulance on the 15th January and again on the 20th February.

On the 1st occasion Amanda was kept in the hospital for two days, due to her neck being unstable and causing excruciating nerve pain in the head and eyes and major issues with her jaws making it hard to even eat, these conditions are called Trigemenal Neuralgia and TMJ dysfunction. Thankfully, the first time the A & E consultant and his team in Daisy Hill Hospital were able to manage the pain via IV morphiene and administered IV fluids the 1st time and Amanda got home quickly.

The 2nd time however was a completely different story as she is now unfortunately allergic to morphine which meant it took them a lot longer to her pain under control this meaning her being in the hospital for two weeks in pain. The nursing team said they had not seen anyone in this level of pain for a long time, bearing in mind this was a surgical ward. The two weeks were spent trialling medications while hoping she didn't take a fatal reaction.

Amanda is now on 36 oral tablets per day (some being medications used for cancer patients) and 4 syringes of liquid pain relief. These are constantly being upped in strength as her condition worsens and has been told she will soon run out of medication options.

I'm sure you can all understand that we as a family want and need to help Amanda as much as possible, as Amanda has a beautiful wee 4 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.

Amanda had a private scan in London on Wednesday 23rd of January as there is no machine here for this. The specialist Doctor confirmed Atlantoaxial Instability (internal decapitation) and Craniocervial Instability. We found out on Friday 25th of January 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 and the Blackrock Clinic in Dublin had agreed to undertake her case and treatment. Unfortunatley they are now saying they are not specialist enough to deal with her case and can't treat her. This is after they have reviewied her MRI results and seeing the dislocations of her upper spine in her neck and how severe the repercussions could be if they do any damage.

Amanda now has to 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 taking into consideration the travel and accommodation, is all amounting to a large sum. We are hoping to get as much help from the public as possible to help us fund this next trip to London. Dr Hakim has basically asked Amanda to come as soon as she can, this is fully depending on funding now. 

If the level of Atlantoaxial Instability (internal decapatation of the top neck joint) is bad enough not to be managed with her neck brace and specialist physio alone, she 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.

We will keep you all updated on Amanda's progress.

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

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Tara Canning 
Mullaghbawn, Northern Ireland, United Kingdom
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