Our lives have been touched by the Down Syndrome Group Northamptonshire (DSGN) and the fabulous work they do. We want to raise money for DSGN to allow them to continue supporting people with Down Syndrome and their families across Northamptonshire and also for Aiden's school (FOSS 1054071) to buy safe accessible play equipment that Aiden can play on with his friends. We plan to do this through running a Black Tie Charity Ball, Aiden's Ball, on the 28th October 2017. To find out more about Aiden's story and how far he has come with the help of some fabulous charities please read on....

Aidens Story by his Daddy
We never wanted a home birth, the prospect of something going wrong and not being close to hospital was too much of a risk in our mind, but we quickly found out that nothing was going to go as we had expected it. We had a lovely pregnancy up to this point, with none of the tests and scans picking up any issues. I remember when people asked what I wanted a boy or a girl, I always replied I just want a healthy baby and to be honest I had always said this as a given and paid no thought that anything otherwise would be the case. Aiden Shay Brennan was born at home after a very quick labour, one midwife got there in time the other arrived shortly after he arrived, they were amazing. Aiden didn’t breathe for 40 minutes, and they had to ‘bag’ him the whole time whilst we waited for the ambulance to arrive which was stuck (there had been an accident on the motorway). During this time most things were a blur, but when the midwife said Aiden looked as though he had Down Syndrome we remember that quite clearly. My wife looked at our little purple baby (5lb 5ozs) lying on the floor and repeated over and over “just make my baby breathe”. Amazingly, the midwife was so calm and I still got to cut his umbilical cord and this means so much to me.

Lucy had Aiden with her overnight on the delivery ward, he was struggling to keep his temperature up and wasn’t really feeding, but they didn’t know then about the holes in his heart. The next day we were told that they needed to take Aiden to check his blood pressure, he didn’t come back to the delivery ward. They told us that he needed a bit of help and was in the special care unit. They took us down to Gosset Ward the Special Care Baby Unit to see him. Nothing prepares you for the first time you see your baby lying in an incubator with wires. Then test after test just seemed to be coming back with more bad news. In the end they found four holes in Aiden’s heart with high lung pressure that complicated things further. Aiden had to be on continuous oxygen which meant only being able to move a few steps away from the incubator, it was always a novel concept when we moved rooms because it was so strange moving away from the wall albeit for 20 seconds.

We spent 7 weeks in Special Care. The staff there were amazing not just for Aiden but for us as a family. Going home each night without your child when they are so poorly is just such a hard thing to do, and as each day passes it doesn't get any easier. Originally because of Aiden's added complication's (pulmonary hypertension) we were told nothing could be done because it was not felt that he would survive an operation to seal the holes in his heart. However after seeking a second opinion from Great Ormond Street Hospital, Aiden's Doctor told us he had never been so pleased to be wrong, and we set our sights on an operation, that GOSH felt confident they could do.

Aiden came home on the 20 October 2011 on continuous oxygen to wait for his surgery at Great Ormond Street Hospital in London. He had been doing well and was bottle feeding with no NG tube, unfortunately that didn’t last long as he deteriorated quickly when he went into cardiac failure, and was readmitted to hospital three times. This was very hard as we now had to care for Aiden in the “general” Childrens ward away from the “safety” and now familiar surroundings of special care. We had been told that catching a little cold would be "devastating" for Aiden, and were doing everything we could to try and reduce the chances of this. Because it was 'flu' season it was actually safer for Aiden to be at home than it was on a children's ward. At home in those early weeks he couldn't go to baby classes or see other children or even see people who had been in contact with other children or those with colds.

Having to feed Aiden every two hours was exhausting, especially given the fact it took an hour or so to feed him, with sterilising equipment, winding him, changing him, preparing the next feed to the exact dosage, administering cocktail of drugs at the exact time and dosage and added to this aspirating his NG feeding tube (through his nose) was incredibly tough as the test paper very often read close to or in the dangerous level (getting this wrong would mean we effectively drowned him by passing feed into his lungs if the tube had moved). All this whilst he was connected to continuous oxygen which meant even the most simplest of clothing changes had to be done with military precision being careful not to dislodge his oxygen supply. Aiden also had terrible reflux meaning after all this he was often sick, blocking the tiny oxygen tubes in his nose. We had to unblock or change the tubes quickly conscious that his stats would be dropping. The stress waiting for the operation was unlike anything we have ever experienced. One cancelled operation later and on the 24 November 2011, exactly 12 weeks old, Aiden had his open heart surgery at Great Ormond Street. Handing him over to the anaesthetist was so hard, watching Aiden suck his dummy and then fall asleep in my arms knowing the risks of the operation I did not want to let him go, we said our goodbyes and then watched him go as the doors to the theatre shut.

Leaving the hospital and walking around the streets of London the day of the op was just a blur, we stopped for a drink in a cafe and the staff were so friendly asking “are you having a nice day” to which we somehow smiled and said yes thank you as the what would they say if we told them what was really going on! Six and a half hours after leaving Aiden we got the news that the operation had gone well and that he was being transferred from theatre to intensive care. We knew seeing Aiden in intensive care would be a shock even though we had been through so much already, but seeing my precious son in the bed with more wires than we could count, drains here there and everywhere, countless medicines being pumped into him, whilst being kept alive mechanically was so so scary. Aiden recovered extremely quickly and was off the ventilator in less than 24hours. When after Aiden had moved to HDU the nurse suggested we go for a drink we reluctantly dragged ourself away from Aiden's bedside, to return a few minutes later to a very smiley nurse and a baby with no oxygen tubes. Seeing his little cheek with no wires made us both cry and the sensitive nurse gave us time together as a family to marvel at our beautiful baby whilst she stood just outside the room. We were home in less than a week, we had been prepped to expect to be in hospital until Christmas! He still had his NG feed tube for a few more weeks and gradually his feeding improved to the point it could be removed. No more wires!!!!! a memory I will treasure forever.

September 2012, Aiden is doing unbelievably well, all the holes in his heart are now completely sealed, we celebrated his 1st Birthday which was pirate themed. His giggles and smiles melt everyone. He particularly loves his swimming lessons, banging loudly on his drum, showing off his skills, particularly clapping and waving, and has just started saying mama and dada, which is such a fabulous sound! We feel so privileged and honoured to be Aiden's mummy and daddy and have so much love to give him.

2013 Aiden now attends a fantastic 'mainstream' nursery. They sign fluently and Aiden's signing is coming along beautifully, he is blossoming.

Winter 2015, we haven’t updated for a while, Aiden is taken by Ambulance to hospital with Severe Croup. By the time Aiden gets to hospital he has burst blood vessels all over his face and body, and a doctor sends him straight to resus. Because Aiden has hypotonia (low muscle tone) his wind pipe is not as strong and so the croup is making his windpipe collapse. Aiden has lots of adrenaline and steroids and spends 3 days in the High Dependency Unit whilst Doctors and Nurses try and get the croup under control, the anaesthetist is on standby ready to intubate. Just when we think things are safe and we are over the heart surgery, this pops up just to remind us how fragile life is. Aiden yet again is a superhero, and comes home to recover.

2016, Aiden starts school, this is momentous, Aiden has come so far in his life and fought so hard, and we fought for him to get a place at this school because we truly believe a place in this small friendly village mainstream school is exactly what Aiden needs. He loves it. He has a great life and is thriving. He loves playing with his new friends, everyone knows him, and likes to play with him and he is learning lots too! He can now write his own name! To his class friends he's just Aiden and that is wonderful!

2017, Aiden is now 5 years old, the support we have received through Aiden’s life so far has been fantastic and it is overwhelming to think of how many people were and are involved in helping him get here and achieve all the great things he wants to in life, we can never thank everyone enough. There are a number of charities that have helped along the way, and it is our hope that we can continue to give back to those who help us. This year Aiden's mummy is being helped by a wonderful group of volunteers who have offered to support her to run a Black Tie Charity Ball. All of the money raised at the ball will go to two charities that continue to help Aiden and many others.

DSGN will use the money to help continue the fantastic support they provide including funding Speech and Language Therapy, Occupational Therapy, and social activities and outings that help Aiden, and his friends with Down Syndrome and our families get together and share experiences, things like Sing and Sign for the little ones and Christmas Parties for everyone.

We also want to raise money for FOSS, this money will be used to buy extra safe play equipment for the school field that Aiden can play on with his friends. Simple things that other people might take for granted like slides that get too hot in the sun can be a big problem for him because he can’t get off the bottom of the slide quick enough so they can be too hot for him to use independently. Aiden is working really hard to build up the muscles in his body and he's desperate to do things independently. Play equipment that he can safely use will help him do this. Aiden loves to play with all his friends at school and to have something that they can all play on together will help him so so much. We hope that the play equipment helps children to play and learn for years to come.

Thank you so much for taking the time to read this. Please if there is anything you can donate to help raise funds or to sponsor the event to help these two charities it would make us all so very happy. We would also love it if you could come along on the night too. Tickets are on sale now!

Shay, Lucy & Aiden xxx

P.S. please be sure to leave a message with your name and/or companies name so we can put your logo on our sponsor board at the event. Thank you so much.

To keep up to date with news about Aidens ball please go to fb.me/AidensBall