Thanks for taking the time to visit my JustGiving page, which is raising funds for Music Therapy for patients in CHI children's hospital, Crumlin, in memory of my first child, Elliott. 

Elliott lived his whole life (almost 8months) in CHI Crumlin ICU, and had two sessions of music therapy just before he died. These sessions gave him (and me) incredible joy and fun - he had a wonderful lady sing and play different instruments, which she helped him to interact with. It was truly wonderful and I treasure those memories. 

I wish for other children in Crumlin, living such incredibly and unimaginably difficult lives, and their families, to have some joy too. These children should be home with their families and out having fun with friends, but instead are often fighting for their lives, enduring extremely difficult treatments and procedures. Music Therapy gives them a respite from the sterile and stressful hospital environment, a chance to have some fun and enjoyment, to lift their spirits, helping them get through their hospital stay. It's the least they deserve. 

Please read Elliott's story below - it's just a snapshot of what such an amazing little boy made it through, when all the odds were stacked against him. I hope it will raise some awareness about his conditions and give parents some hope for their very sick babies.

Here is his story:

Elliott Seamus Patrick Mc Kenna Roddy
02/08/2019 ~ 21/03/2020

Elliott was born on 2nd August 2019 with several life-threatening conditions: Right-Sided Congenital Diaphragmatic Hernia (RCDH: no diaphragm on his right side); Tetralogy of Fallot (TOF: a complex heart condition), Heterotaxy Ambiguous (his organs, veins and arteries didn't develop properly or in the right places) and a polycystic kidney.

Thankfully, the sonographer knew her stuff and she picked up on his CDH and a potential heart issue at the 22week anomaly scan (babies can often be born without a diagnosis) and referred us to Holles St.  Elliott's chances of survival were very small (it was estimated that only 6 children like Elliott might be born each year, that's 1 in 26million!), but because we knew about his issues before his birth, there was a chance that he would make it - everything was essentially fixable with surgery - we clung to this hope. 

He was intubated at birth because he couldn't breathe for himself. When he was only 1 day old he was very unstable and had one chance to make it - he needed ECMO (a heart and lung bypass machine). Thankfully he made it onto ECMO safely and for a week his body grew stronger and he was safely taken off it again. Over the next 7 or so months he had numerous procedures and operations including two diaphragm repairs, two stents placed in his heart (one surgically), he had a tracheostomy for long-term ventilation and a G-tube fitted (for feeding directly into his tummy), and finally open-heart surgery to repair his TOF.

For a baby who shouldn't have survived even for a few hours, he survived all his procedures and operations and made it to 33weeks and one day old. 

He developed sepsis multiple times during his life which he fought successfully, but after his open-heart surgery he quickly developed a horrible, resilient sepsis which his body could not cope with. We had to let him go on 21st March 2020, 9 days post open heart surgery.

We were lucky to have so much time with him and will be forever grateful to his amazing team of consultants, doctors, nurses and therapists. We hope his life will give medicine and families hope for other babies in future. He was the most amazing fighter, who we will love and miss forever.

You can watch a video about his story here: https://youtu.be/VVvgIQktRLM

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.