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Safe Garden for Thomas
£155 raised
44% of £350 goal
7 contributors
0 days left
Ended May 17, 2017
We have a son called Thomas who is 2 years old he has a life limiting heart condition. Please read our story below, we are trying to make our garden a safe place for him to play.

Thomas our son is 2 years old please help us create a safe garden for him to play in. He has a life limiting and severe heart conditon and needs to play close to the house incase he becomes ill. 

Hello, Thank you for taking the time to read our page.  

Me and my partner Matthew have a son called Thomas who is 2 years old who has a life limiting condition - CHD. please read our story below, we are trying to make our garden a safe place for him to play,  i know it may seem long but we appreciate it.

Thomas's Story: We were lucky! The 21st June 2011 was the date of our 20 week scan. We went for the scan, all excited as any couple would be and the nurse told us we were having a boy, which we thought anyway . Then she looked concerned, said she wasn't happy with the right side of the heart the way its pumping, she couldn't see the 4 chambers properly. 

This she said might just be that they can’t see it correctly, but she wasn't qualified to say anything else about it. Just that it "wasn't right." I went back for another scan the next day.It was confirmed with a senior Sonographer that he did in fact have a heart defect. We were distraught; we didn't know what to think or what to do. We had more scans over the next few months but our Dr said because Thomas had a large VSD (hole between the bottom two pumping chambers) this allowed enough blood to flow/mix so he didn’t think he would be ill immediately after birth so were allowed to have natural birth at my local hospital.

It came to his due date on 8th November, nothing.. they said he was OK so would let me go the full 2 weeks if he didn’t come before. It was the 22nd November 2011 when he was born 2 weeks over and although it was a traumatic birth, he was facing the wrong way and needed assistance, but he was born a very good 9lb 3oz.He was taken away to be checked out after a quick cuddle. It was 5 hrs until we got to see him again; he was having tests and checks done and then he was in an incubator to keep warm. As it was then 7 in the morning OH had to leave and I had to get some sleep. It was only 10.30 in the morning - just 3 and half hours later that the Drs came to tell me that Thomas was going to be transferred to Alder Hey childrens Hospital. We didn’t know that this was going to happen and was very scared. 

They said he needed to go to Alder hey for more intense checks as they didn’t have the equipment at Preston to check him over properly. I rang matt and he was back at hospital in 20 minutes. Just in time to say a quick hello to Thomas before he was transferred to Alder Hey. Matt went to meet him at the hospital. I had to stay at Preston as I couldn’t be discharged straight away.A few hours later the Drs rang me at whilst I was in hospital they needed to perform a balloon septostomy which is where they use a tiny balloon to stretch a hole in the heart to allow more blood to flow. They said this had to be done for him to survive but I had to give them consent over the phone. It was very hard knowing that he was going for his first ever operation and neither me or matt could be there for when he went in. matt got there as quick as he could, he didn’t drive so had to get a lift of someone, but when he got there Thomas had a nurse called Laura who was looking after him. She was brilliant she didn't leave his side.

It was 3 days until I was discharged from hospital and desperate to see my little man. The Drs at Alder hey explained that he actually had a few more problems than first thought, he has TGA, Transposition of the great Arteries and a VSD - hole in the ventricle but he also has DORV, which is Double Outlet right ventricle this is where the pulmonary artery and the aorta—the heart’s two great arteries—both arise from the right ventricle. He also Has Hyposplastic Left Ventricle which means a small left ventricle. Too small to function correctly. The hole that the Drs created is called a ASD, Arterial Septal Defect, which is a hole in the wall between the top two chambers. He was in hospital for only a week, he was a superstar.
Thomas at one week old
 Any baby is hard but a baby with a cardiac condition is harder.Thomas had to go back to Alder hey for a heart catheter in January 2012 which is a scan of the heart, it meant that Thomas would once again go into theatre and under sedation, more papers to sign for consent. It was 3 days later, 26th January one of the Doctors called to say that he needed surgery to help lower the pressure in his lungs, so that his lungs don’t get damaged and so they can still do the 2 operations later on. Thomas had to go back in February for Pulmonary Artery banding. It was open heart surgery but they don’t stop his heart this time, they fit a device onto the artery that takes blood to the lungs and putting a clamp like thing on it.

This was major surgery and he had to be operated on and his chest opened, although they didn’t do Open Heart Surgery - which is when they bypass his heart and lungs using machines. He had his banding done on the 6th February and was in hospital for about 2 weeks.
On April 7th 2012, on my 30th birthday, he started breathing a bit funny, we were supposed to be going out but we took him to our local hospital, where his sats were 64! They gave him oxygen and he had to stay in for a couple of days, although they found no reason for it, they kept him in for a few days, he was eating and drinking OK and his sats went back up to 78 (normal for Thomas) so they let us go home.At the end of April, he had another heart cath and from this they had told us that he would need the Glenn. - the next stage of surgery.
We were given 1 week notice and prepared for surgery on Friday 18thMay. It ended up being cancelled minutes before we were due to go down to theater! We were gutted and relieved at the same time. We took Thomas home and had a lovely weekend with him before going back again on Monday morning. 

We arrived at 7am and he went down to theatre at 9.30. It was the longest day of our lives so far, each time seems like the longest! Thomas's operation went well but they did find a leak which they didn't know about before. Luckily, Nelson (the surgeon, and now who lives in Oz :) ) fixed the leak rather than coming back for another op later on. If they hadn't of found it then it could have damaged his lungs and then not been able to have the Fontan (third stage) when he's older.
Thomas in ICU after first surgery
Since coming home after his Glenn he has been so much happier boy, he still doesn’t sleep through at night, but he is smiling and laughing lots and he is really coming on well. We have to have a check up on his leaky valve and he will need the Fontan in the future.

The Fontan is the last thing they can currently do for him bar a transplant (if hes suitable when the time comes) but for now, he is doing ok, he has speech delays and is soon starting therapy. 

He has a long way to go but this is Thomas Today
He will never be "Fixed" all surgeries and procedures are palliative but we hope that more medical advances can be made and more awareness made, as CHD receives NO GOVERNMENT FUNDING 

Children with CHD get breathless very easily and can get cold twice as quick as normal children. He needs to rest frequently and as a consiquence doesnt play for long periods of time. CHD children also pick up colds and flu's and infections much easier too. We dont take him to the public parks becuase of this, although he can physically play on the equipment, becuase he gets tired and cold easily, if i had to get him home quickly to warm him up it could take a while depending where we are,so generally we dont go out to parks with him. 

What we are asking for contributions for:- We are EXTREMELY lucky that in the UK we have healthcare so do not need to raise funds to cover medical expenses but we would like to give thomas the things everychild should have and We currently live in a ground floor flat which we got through a local housing association. It took us 4 years being registered with them to get a place, so we were delighted when we realised it had a garden thomas could play in  and come inside when he needed too, if he started getting cold or tired. Although once we moved in the Landlord has removed all the decking that the previous tenant had installed, leaving us with a muddy bog, with rocks and rubbish and a fence which is falling over.. NOT somewhere a child could play in nevermind a poorly child.  The lanlords say that gardens are not their responsibilty and if they "make the fence safe" then they will simply take it away.. :( We decided that we would try improve the garden, so i set about removing the rubbish myself and raking up all the rubbish and leaves. Our idea was to turf the garden, with either a patio or deck area and a new fence to make it secure place for him to play in.  Once i started raking the topsoil, i quickly realised im out of my depth regards gardening.. i know nothing.. its boggy in places, clay like in others, and since its rained, puddles of water as there are nio drains... we dont want anything fancy, just a level garden with grass and maybe a shed, deck would be good upon exit of the door, with a shed for thomas's toys and just an area for thomas to play in. Then he can play outside and we can get him inside quickly if we need to.

We estimated all this will cost between 900 - 1100 including Labour, landscaping, drainage, turf, and toys for the garden for thomas to play with

We are saving up what we can but know we cannot do it ourselves as i am Thomas's full time carer and Matt is currently out of work due to recovering from surgery after having a pacemaker fitted just a few weeks ago, hence this page

If we raise more than we need for the Garden to be done, we will donate any monies above £1000 the price it costs to childrens heart charities and will post proof of this here.

Thank you for Reading our story, i hope you can help.Emma , Matthew and Thomas x

ALSO MAY I TAKE THIS OPPERTUNITY TO PLEASE ASK, If you see any photos on Facebook asking you to "like" the picture becuase you may save a childs life etc etc, PLEASE DONT LIKE it or even Comment, these are ALL scams, photos are stolen from families like ours and used for likes to get money for the page owner. I decided not to use more graphic photos on this page for that reason.  Thank you. x


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