Lette's Medical Treatment Fund

€14,010 of €19k goal

Raised by 374 people in 34 months
Lette March  Limerick, IE

At the age of 28, Lette was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) and NCS (NeuroCardiogenic Syncope - with Respiratory Arrest) . In the past 5 years she was also diagnosed with EDS (Ehlers Danlos Syndrome) , Gut Dysmotility and a Seizure Disorder.

In 2013 Lette's hips failed. She now uses a wheelchair. In May 2014 after a syncope and respiratory arrest, where she needed rescue-breathing for over 17 minutes, she started to experience recurring seizures, Ended up in the HDU and  ICU and has been in and out of hospital many times since. In December 2014 she was admitted to hospital once again and diagnosed with Gallbladder and Gut Dysmotility with other Gastro related problems whereby She may need a Bowel or Gastric Pacemaker and this is currently under investigation allong with other operations to help. 

Throughout 2015 & 2016  she continued to be very unwell and was admitted to hospital 9 times.

The health system’s slow pace means Lette must wait months to begin specific medical investigations to rule out any further serious complications.

We decided to ask for your help because, over the past 5 years Lette's health has seriously deteriorated. These conditions are very rare, and treatment is complicated by a lack of understanding by healthcare professionals. Specialist treatment for these conditions is simply unavailable in Ireland.

Your assistance has already allowed Lette to pay for many tests and investigations as well as travel for an initial assessment and tests in London with Prof. Rodney Graham , who confirmed a diagnosis of EDS Type 3 with Gastro issues where he advised to get back over ASAP for Gastro tests with a Nurogastroenterologist who specialises in EDS. We are currently waiting on this new appointment.

We hope to continue fundraising to allow for follow-up treatment sessions with Prof. Graham and to meet with 2 more specialist consultants in London about her rare medical complications. It will provide for diagnostic and clinical examinations, treatments, scans, and associated expenses to discover a course of treatment for her condition, allow her to promptly rule out any high-risk complications, and most importantly to hopefully improve her quality of life.

We deeply appreciate any contribution that you can make, or awareness you can spread, to help Lette get access to the treatment that she needs.

Thank you.

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 2.1K total shares
Update 29
Posted by Lette Moloney
2 months ago
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Hi all, I write today with wonderful news that a good man by the name of John Steele has set up a Bowie Tribute gig in Dolans Wearhouse in Limerick where all proceeds will go towards this (My own EDS medical fund) and towards Zondra Meaney's medical fund also. (She has EDS and a host of different issues too!)

Tickets are just €10 and there are some fantastic acts, please share or if you feel like coming on down for a great gig, you're more than welcome! :)

A Massive Thank You to all involved and to all who contribute :)

Lette <3

In other news, sorry for the long hiatus, I have been very up and down with my health recently and have been in hospital a few times in recent months with continuing problems with my GI Issues and I am now waiting on news of an operation to hopefully help that. I also have my referral in to the EDS GI specialist over in London so just waiting on that appointment now. I will be updating shortly on my blog all about that. Stay Tuned!! :)

Lette <3
TributeTo Bowie - Dolans Wearhouse
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Update 28
Posted by Lette Moloney
10 months ago
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Fully updated and detailed blog post on what happened during my little emergency while getting treatment up in Harolds Cross Dublin at the start of February. I ended up being rushed to St. James's Hospital Resus by Ambulance. You can see all that happened then, and since at the following links.

Part 1 may be seen here: https://irishdysautonomia.wordpress.com/2016/04/05/the-good-the-bad-and-the-emergency-part-1/

And Part 2: https://irishdysautonomia.wordpress.com/2016/04/13/the-good-the-bad-and-the-emergency-part-2/

Thank you as always for taking the time to read.

Please never hesitate to get in touch if you are interested in helping out with fundraisers or anything else to help me get back to London for treatment and a massive thank you to all who have helped already, I deeply appreciate it. I couldn't do any of this without all of your help!

Lette xxx
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Update 27
Posted by Lette Moloney
12 months ago
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Harold's cross turned out to be fantastic for me until I had a bit of an emergency. I had a faint followed by a seizure in the Physio room and was rushed to St. James' hospital on the Tuesday of the 2nd week up there. Needless to say I had to be discharged from my treatment in Harold's Cross and not sure if they will have me back after what happened. Currently juggling trying to recover and many hospital, consultant and X-ray appointments. I have been advised to get back to London as soon as I am fit enough which I am hoping will be next month at the earliest (April) I will get a proper blog post written very soon filling you in on all the details. Thank you for taking the time to read, share, donate. I appreciate everyone's help so far, thank you all so much, I wouldn't get through all this without all your help! Updated Blog post coming soon Lette xxx
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Update 26
Posted by Lette Moloney
13 months ago
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Never a dull moment!! My treatment in Harold's Cross Rehabilitation unit was going so very well until Tuesday 16th , on the second week of my stay, where I was rushed by ambulance to St. James' hospital Emergency Resus in Dublin after having a prolonged seizure during that days Physio session.

I had another seizure in the ambulance on the way and continued to seize in the resus room for a while after where they fought to get my stats under control.

I had a tough couple of days and of course, as as result, was physically unable to continue my treatment in Harold's Cross which has left me terribly disappointed as I found it to be excellent but it may have been a little too much for me too soon.

For now, I need time to recover but once I am able, I will write up a full and detailed blog post about everything to fill you all in.

I am aiming to get back over to London in April for further consultations, tests and treatment that I am unable to get here because there are absolutely no EDS specialists anywhere in Ireland besides a few doctors in the HSE who may have a very basic, knowledge.

Any and all help, as always, is hugely appreciated and I couldn't get any of this specialist treatment in London, that is very much needed to try and improve my quality of life, only for your very generous help.

I would like to take this opportunity to thank everyone in Harold's Cross who were directly involved in my overall care while I was there.

The head of my team was consultant Prof. Veale and his reg doctors but I must especially thank the ward staff, of The Sacred Heart Ward, the nurses, physios, occupational therapists, Rian the therapy dog and all who I met in between as part of my care there.

I can not commend enough, the level of professionalism, friendliness and genuine care from all staff involved. I found the experience amazing and I only hope I can come back again when I am more able for it. I cannot recommend the place highly enough! An absolutely fabulous resource.

As always, I must thank the most important person in my life, Keith. Thank you for your unyielding love and support but most importantly your patience with all of this and what life has dealt us in the last number of years with this illness. It hasn't been easy and the amount of pressure you are sometimes under doesn't go unnoticed and I am sorry my health took this unforeseen turn for us. I could not ask for a more wonderful, loving and caring person in my life. My partner in crime! My very best friend. I deeply love and appreciate you more than I can ever express. Thank you from the very bottom of my heart for all that you do.

Please bear with me folks while I take sometime to recover and I will do a full blog post about everything as soon as I can.

Thank you dearly for taking the time to read and for all your valued support, Lette. Xxx
Not having the best veins in the first place, while also having a seizure, doesn't make getting a line in very easy!!! Just slightly battered lookin'!!
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€14,010 of €19k goal

Raised by 374 people in 34 months
Created May 26, 2014
€20
Padraig Moc Ambrois
2 months ago
LC
€10
Lui Ciolfi
2 months ago

I will be at the gig in spirit!

€10
Maria Wolters
2 months ago

Because I can't make it to the gig ...

€50
Anonymous
2 months ago
DC
€20
Donal Cronin
2 months ago

I can't make the Bowie tribute gig so here's a little donation to the fund. Keep on fighting Lette!

SL
€20
Sarah Lyons
2 months ago
€100
Margaret Lennon
5 months ago

Given with thanks and every good wish for you dear Lette from myself and Eva, may you be blessed with the gift of better health and much happiness ♥

€15
Padraig Moc Ambrois
5 months ago
AO
€15
Amie O'M
6 months ago
€20
Nicole McCarthy
6 months ago
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