Weʼve raised £1,115 to help my grandson Ted and family with his battle with Pulmonary vein stenosis by walking 140 miles from Bournemouth to Leamington spa.
- Bournemouth, UK
- Funded on Wednesday, 3rd October 2018
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SADLY SINCE MAKING THIS PAGE OUR AMAZING GORGEOUS LITTLE TED HAS PASSED AWAY.
TED PASSED AWAY IN HIS MUM & DAD'S ARMS AT HOME ON 16TH JUNE. THE MESSAGE BELOW WAS POSTED ON TED'S FACEBOOK STORY BY HIS MUMMY NATALIE -
My gorgeous, smiling, amazing little warrior ended his fight yesterday. Ted passed away peacefully in my arms at 10pm last night.
He fought as hard as he could and gave us an absolutely amazing year with him which was filled with so much love and happiness.
Even with everything Ted has had to go through in his life he was still the happiest little boy there was. His smile was enough to light up a room and melt the hearts of everyone he met.
Ted fought right to the very end. He really didn’t want to leave but his body failed him. It was Kevs bday yesterday and he got his wish of spending his birthday at home with his son but unfortunately it wasn’t the way we had hoped for.
We are really struggling but know that you all love Ted very much too x
PLEASE SEE BELOW THE ORIGINAL POST TO THIS PAGE BEFORE OUR LITTLE TED PASSED AWAY, WE ARE NOW RAISING THE MONEY IN TEDS MEMORY FOR HIS FAMILY AND TO GO TOWARDS A MEMORIAL GARDEN AND BENCH FOR TED............
Walking for our very own Super Hero - Ted
I am Ted's Grandad Anthony O'Reilly and I am going to be walking from Bournemouth to Leamington spa starting on the 9th of July with the aim to finish on the 13th July which is the date of the Fundraising night for Ted at the Irish Club Leamington spa.
I aim to walk from
Bournemouth to Salisbury - 28 miles on 9th July.....
Salisbury to Marlborough - 29 miles on 10th July......
Marlborough to Burford - 33 miles on 11th July......
Burford to Stratford - 31 miles on 12th July......
Stratford to Leamington - 12 miles on 13th July.
So I aim to finish on Friday 13th July in Leamington spa at about 12.00 midday.
Please follow my journey via my Facebook page - https://www.facebook.com/anthony.oreilly.353
Please see Ted's story below -
Nat and Kev found out at 12 weeks pregnant that there was going to be problems with Teds growth in the womb and at 20 weeks received the diagnosis of IUGR (Intrauterine Growth Restriction) and was told that Ted would have to be delivered early and would likely be very small.
Along with IUGR, Natalie developed severe pre-eclampsia which had gone into her nervous system and at 28 weeks was rushed to theatre for an emergency c-section. Ted was born on Wednesday 31st May at 00.36 weighing a tiny 1lb 9.5oz (725g).
Ted wasn’t breathing when he was born and was taken straight to the Neonatal Intensive Care Unit where he was stabilised. This was to be his new home for 4 months and he finally got to go home on 29th September 2017.
Ted has had a very rocky journey from day 1 and has fought through everything. Ted has chronic lung disease and is on home oxygen.
After months of being in and out of hospital asking for help as they knew something was wrong with Ted but was let down over and over again, Nat and Kev drove Ted to Birmingham A&E at the start of January 2018 and begged for help. They were admitted immediately and 2.5 weeks later Ted was diagnosed with a very rare incurable heart condition called Pulmonary Vein Stenosis. This condition causes the veins going to teds heart to narrow and eventually close.
On 26th January At 8 months old and weighing a tiny 7lb Ted had an operation to open up his veins. Ted started to gain weight and reached 8lb 11 but he started deteriorating again and went in for his second operation on 5th March.
Birmingham Children’s Hospital then said there was nothing more they could do for Ted so Nat and Kev asked for a second opinion from Great Ormond Street and Ted was accepted for open heart surgery. Once Ted had recovered from his second operation he was transferred to Great Ormond Street Hospital. At 9.5 months old Ted reached 9lb and had open heart surgery on 19th March.
Ted recovered very well from this operation but then unfortunately suffered a pneumothorax and was then treated for pneumonia. Ted had a long recovery in Intensive care before being transferred back to Birmingham children's hospital on 27th April where he remained in ICU.
On 2nd May Ted moved out of ICU and into Higher dependancy. Numerous tests were carried out on Ted to try and find out why his lungs were so much worse then they should be and to try and determine why it was taking Ted so long to fully recover.
On the 6th May Nat and Kev were finally able to take Ted for a lovely trip outside of the hospital but unfortunately shortly after Ted took a turn for the worse. Ted continued to deteriorate and was rushed back into Intensive care on 8th May, it seems Ted's Veins had already started to narrow and on the 9th May he was rushed into Surgery where they performed another operation to open up Ted's veins. Ted had a 50% chance of survival through the operation.
The operation to open Ted's veins was successful and Ted was no longer struggling to breath. Ted remained on life support and had many ups and downs and numerous issues until the 19th May where he came of the life support. Unfortunately this was short lived and Ted was rushed back into surgery on 26th May for yet another operation to open up his veins, Ted was back with us after a long 5.5 hours in theatre. The operation didn’t work and ted stayed on life support.
On the 30th May, the day before Ted's birthday, Ted was taken to theatre yet again. This was the last attempt to try and get him home.
Ted come out of the op ok and the Surgeon was happy with how it went. Ted wasn't recovering very well after surgery so unfortunately he was on life support for his first birthday, he has since woken up on the life support and managed to open some of his present's and we have had even had some smiles. Ted continues to recover in Intensive care.
Updates appear here
Samantha O'Reilly started crowdfunding
Leave a message of support
Jul 18, 2018
Unable to make last Fridays event, sure it would have been a great success! - best wishes, Sue & Jim
Jul 17, 2018
Hope this helps in some small way xxx
Jul 15, 2018
Jul 13, 2018
Following social media connection we both have, I saw your page and your story, which brought me to tears. I wish you all the best for the future x
Jul 13, 2018
Well done all. Amazing what you have done in memory of gorgeous little Ted. He will be looking down on you and will be so proud of you all x
Jul 13, 2018
Well done to you all
Jul 13, 2018
Thinking of you. x
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