Barrett Boys EDS

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3 Boys with Ehlers Danlos Syndrome. Raising awareness and funds to help them with treatment
https://www.idonate.ie/BarrettBoys
Bank Acc details please PM

This page has been set up for people to follow the three Barrett Boys Brandon,Keane and Kallum and their struggles with a rare illness called Ehlers Danlos Syndrome(EDS).EDS is a connective tissue disorder which can affect the entire body.There are so many different ways it can affect a person from just the usual muscle and joint pains dislocations and subluxations etc to gastro,heart,eyes.No two people are affected the same.There are no specialists in Ireland who can look after the person as a whole.There is even very few who can look after someone in any given area of the body.All three boys attend Great Ormond Street London a few times a year and when emergencies arise also.Kallum has also started to attend a hospital in Leuven Belgium for severe gastro complications.All these trips are self funding as the HSE do not cover it on the Treatment Abroad Scheme.So thanks to our friends and family we have recently started to fundraise to continue to get the boys the care and help that they require.Please feel free to contact us in relation to anything.

25/10/2026

CHRISTMAS RAFFLE

Sorry was meant to put up about this on Thursday while I had a bit of time sitting in Blackrock with Keane getting his infusions but typically in our family things don't go to plan! Keane turned out to be too unwell for the infusions to go ahead. Bloods weren't right and they pulled the infusions. More tests done so waiting on results. He has been quite sick recently so better safe than sorry.

So back to what I was meant to put up. Christmas Raffle is on December 4th with the usual amazing amount of 40 prizes and for the usual €5. We would love if someone could help to sell some tickets for us as we are struggling this year with all 3 being unwell at the same time. If you can just send us a message and we will get them to you. Otherwise they can be bought here through revolut and through Ian at work. Our usual 1st prize is €1000 One4all vouchers but it's changed this year to help people out with Christmas so €500 One4all and €500 Dunnes so we hope this helps whoever wins
Prizes are all vouchers and Hampers so good luck to everyone.

20/10/2026

Hate these days. Keane has been so unwell during the past five days or so. Kallum has been even worse and not being able to sleep etc with the pain. On top of all this Brandon is in London with Ian having a lot of tests being done.
It's the stress that is so time consuming as you just can't turn it off. I got outside the house three times last week as they are too ill most days to leave them alone but people don't really see that as they look ok.
It's not just the medical stress as things just build up. We have work being done on our house and the way things have been left is dangerous for Kallum and the customer service has been atrocious to the say the least. The cost was all my carers grant and it feels like I've let the boys down. It was to help them get stronger and mentally help them but now Kallum and Brandon have got to the stage health wise that they can't actually use it and even they are now stressed watching me being stressed!!
Don't get me wrong we've had lovely work men in our house this year doing everything they could to help us out and work around our schedules so there are good people out there but it's just the stress and worry that today it has really hit me.
We have lovely friends and neighbours and Ians work colleagues who all try and help and we can't thank them enough.
Sorry just on a downer today so might just go off and have a hug with my K boys as I know deep down eventually we will get there. Thankfully we've got some good boys on our hands.

13/10/2026

Brandon still has some Christmas cards for sale. Brandon has drawn them all personally. I eventually got them all posted out after the set back last week so hopefully everyone is happy with them. We have had some amazing feedback on them. We can't thank Class A Printing Ltd for the quality of cards.
Anyone wants some please contact us here or through Ian at work. €6 a pack of 5 or 2 packs for €10. Can be paid through revolut at .
We have a lot coming up medically for the boys so we can't thank you all enough for the support.

09/10/2026

Apologies to people who bought some of Brandons cards that were due to be posted today but due to him taken bad overnight and also Kallum I am unable to make the post office today.
Thanks to everyone who has bought them as it has helped to cheer him up. I will get them posted on Monday.
Apologies and thanks again.

06/10/2026

Hi everyone Brandon is once again doing his Christmas cards. They are a pack of 5 different ones. Each pack is €6 or 2 for €10. Payment can be through revolut.You can order them through here or through Ian.
Art keeps him happy and takes his mind off everything that he is going through on a daily basis especially now with with London etc.
Thanks for all the support.

28/09/2026

We've had so much going on recently with all 3 boys that I haven't had a chance to catch up.
At present having a break for an hour or two as sitting with Brandon in James's while he starts injections for Immunology. Three months of having to come in here to be trained.
He also has his next appointment coming up in London for mris costing over €3500! These ones can't be done here but are needed to find out what is going to be done with his head and spinal cord. He is in alot of pain which is just getting worse as he goes on.
Kallum is in a really bad way. Down to eating every second day only as the pain from eating is extreme. Back with the consultant soon to see what happens next as he can't keep going like this. I think we get about 3-4 hours sleep at night.
Keane losing weight still so now down around 18kg in a year which is not right. Trying new meds to see if anything can help to stop it.
Apart from all that and trying to balance out appointments we don't get to do anything else. Feel like we are on a non stop treadmill going nowhere.
Sorry to everyone for not getting back to people.

15/09/2026

Well we have two shattered men in the house after going to London. We got told we needed to get Brandon to London to see another consultant as the one here said he thought he would be the only one he would trust to look at Brandon. So only thing holding us back was waiting on disc versions of his mri's or we would have had an appointment within 48hrs!
The consultation was today. They said he was a lovely guy who really listened to Brandon. Some consultants don't want to really listen once they hear EDS. The result seems to be that they want to be 100% with the diagnosis as its seemingly a very rare problem and would need very invasive treatment if they can even do it safely. Spinal cord is not a thing to be played with. He has been in so much pain with his head etc it's been hard to watch.
So he has to head back for specialised mris in The Shard in London and then back over again for results as a team will need to review them all before a plan is given.
Now to wait for the appointment and get ready to go again.

22/08/2026

BONUS BALL RESULT

Congrats to Hannah Farrell who had number 15 in the Bonus Ball tonight.
Thanks again to everyone for the support.

20/08/2026

ALL NUMBERS ARE NOW SOLD,
ONCE AGAIN THANK YOU ALL. Bonus Ball

We have been meaning to do this the past week or so but Kallum hasn't been well at all so before it goes on any longer we will do it for Saturday night 22nd on main draw.
Usual €5 per number and can be paid through revolut as usual at

Thanks for the continued support.

15/08/2026

Feels like it's been a long week. Kallum turned 21 last Saturday but didnt really get to enjoy it as he was feeling really bad.
Sunday night we had to do some respiratory tests during the night but his heart rate was so low the alarms kept going off all night which by the end we were laughing as it had got that bad in how much we were awake. I only would get into bed and back up to check him.
Monday Keane was in the Mater for respiratory and thankfully it didnt go so bad. From there to the Mater private to pick up Brandons mri disc but not seeing consultant until the 24th. Then we went back to where it all began Temple St to catch up with Kallums favourite medical person his old physio who we have kept in contact with the past few years since hes left. We were going to try lunch out but he really needed to get home as he was that bad.
Wednesday Ian took over as he had to have a procedure done in Sports Injury Clinic. We dropped him off then went down to Omni to have a look around but once again had to leave as Kallum could barely stand with the pain. Honestly thought Ian was going to be in one hospital and Kallum in another the way he was. We got home and I must have constantly paced the floor waiting to see how he was but it eased enough and we knew he was in Friday with his consultant anyway in Blackrock and thankfully Ians brother collected him from hospital.
Fast forward to Friday and find out he needs another look inside as they want to look and see if they can find something they are looking for. Sat thinking we would be waiting for a date but as Keane needs infusions in less than two weeks we have to bring Kallum with us and it will be done on the same day to make things easier for us! Nothings ever easy with us lol. But of course we do have more appointments before then to keep us busy. Never would think Ian was on his holidays from work lol
Hope everyone is doing as good as you can. Try to enjoy the weather while it's still here.

Address

Highlands
Drogheda

Website

https://www.idonate.ie/BarrettBoysEDS

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