Barrett Boys EDS

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Barrett Boys EDS

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.

12/06/2026

All numbers are now sold for the FATHERS DAY BONUS BALL

Hi we have a bonus ball for tomorrow nights main draw for Fathers Day. Usual €5 a number to revolut

Thanks everyone for all the support especially now.

05/06/2026

Golf raffle on July 10th. Some great prizes for €5 each. You can buy through revolut here at
or from Ian at work.
Thanks for all the support.

02/06/2026

Nearly forgetting with everything going on that we have a Golf Classic next month July 10th in Hollywood Lakes GC in Ballboughal.
A few tee times left so contact Ian to get yourself in for a great day and some great prizes up to 5th place and also womens prize too. Teams of 3 €150.
We also have a draw on the day with 20 great prizes. Usual €5 per ticket and can be paid by revolut to or from Ian at work.
If anyone would like to take some books to sell we would really appreciate it as we are up to our eyes with the boys. At present before the golf we have 2 surgeries and tests plus around 18 appointments so far while still waiting on details of London etc.
So thank you all for the continued support.

26/05/2026

Another day with more hospital appointments.
As people know Brandon has been struggling with neck head pains the past near two years now which resulted in him being admitted in March. Today we had another appointment with someone new.
People were thinking it was a csf leak from the brain but it seems now we were all looking in the wrong area as it's they think a spinal fluid leak which is quite dangerous. They need new images which they are not sure that they all can be done here so it looks like it's back to London for specialist treatment for Brandon. Referrals were being sent to see a consultant over there and here aswell. If it's what they think then it will need surgery. The consultant today stated which we liked that he wasn't the person to do it and that he would only recommend the guy in London. We prefer when people say they wouldn't do it as they've never seen it before but know someone who can do the surgery.
All we got is he is extremely hypermobile especially for a male and that all this is contributing to his problems.
Feel so sorry for Brandon as he has had a hard six years with surgeries every year.
I wish we could say that was it for this week but still more to come.

08/05/2026

What a busy two days with 5 appointments!
To top it off Kallum decided yesterday would be one of his worst days ever between a bad night followed by getting sick in Blackrock Clinics carpark and then been in so much pain for the rest of the day he was in tears. Wouldn't mind but neither of yesterday's appointments were his. Keane was in Blackrock and Brandon in the Beacon.
Kallum did though want to keep a promise to me and bring me to Howth for lunch for my birthday even though he's on a liquid diet.
Today all 3 were in the Beacon for cardiologists and at least Kallum wasn't as sick as yesterday. Hopefully now we have a quiet weekend before we are back in hospitals next week.
Thanks for all the support concerning the golf.

06/05/2026

Sorry been a bit quite on here as we've been up to our eyes with things.
Kallum and Brandon not doing too good so we are on edge with both of them. Brandon seeing new consultant next month about his neck pain etc. He is in so much pain with it.
Kallum having surgery next month so hoping it gives him even 10% reduction in pain. He's had to come off all food and go back on liquid diet for a few weeks. Poor kid never gets a break. We've had to cancel a few appointments recently as hes so unwell but thankfully hospitals understand and moved them to suit us.
With all this we are so so far behind on the Golf Classic this year but it's going ahead on July 10th in Hollywood Lakes GC Ballyboughal. €150 for a three person team with some great prizes.
Usual raffle on the day too with 20 prizes and the usual €5.
So if anyone would like to participate then please contact Ian about tee times. Anyone wanting tickets just let me know as can be paid through revolut. Also if anyone wants to take some to sell we would really appreciate it as we have so many appointments coming up.
Thanks once again for all the support.

17/04/2026

Another day another two hospitals!
Kallum saw a new pain specialist who was very good with him. On one pain he thinks he knows what's wrong, anterior cutaneous nerve entrapment syndrome, so hopefully surgery will help him once he gets the go ahead from James's as all surgeries etc go through them for treatment before on the day. Second pain he thinks might be alot of scar tissue which he might try treatment every nine months or through a pain stimulator in his spine and the last pain is the most concerning. That is one that everyone is worried about strangulation of the bowel or once again malrotation. This is the pain that we have to run straight to the hospital.
Thankfully Kallum likes him and happy to have some sort of plan.
We got word yesterday around 1pm that Brandon needed an xray on his neck before 4pm today so that his new consultant could view that and his recent mri and ct scan on Monday. Nothing like pressure lol. We dropped off on way home from St Vincent's into the Mater Private in the Northern Cross which was brilliant and so quick. Hopefully we will hear soon enough from him.

01/04/2026

Bonus Ball results
Sorry for the delay but the Lotto app itself took a long time and then Kallum wasn't too good.
Congrats to the winner of number 39 Siobhan Fitz. We will be in contact about delivery.
Thanks to everyone for the support and apologies to the people who didnt manage to get a number this time.

30/03/2026

All numbers are sold folks thank you all so much

EASTER BONUS BALL

Hi guys sorry we haven't had a chance to do many of these this year so far because of everything going on.
Things still not great with the boys and alot of answers still required. Rotten year so far but things can only get better!!
Right usual €5 a number to
will be done on Wednesdays main draw.
We can't thank you all enough for the support especially the past few weeks.

12/03/2026

Blackrock Clinic day today! Brandon got out of the Hermitage on Tuesday afternoon but had to come here for Occipital nerve block or else he would have had to stay in the Hermitage for another 10 days. Pain specialist lovely as once he heard Keane was in here this morning for infusions he moved Brandon to here so they could be done quicker. So at present ones on floor 2 and ones on floor 5 with poor Kallum just waiting. Granted we did run into his consultant and had a quick chat. Before we got in we also were met by the reception staff who welcomed Keane back lol. Too many trips to hospitals I think.

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Highlands
Drogheda

Website

https://www.idonate.ie/BarrettBoysEDS

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