Elliott’s Story

TTC7A deficiency is a rare genetic disease that causes diarrhea, inflammation of the intestines, bowel obstructions, immune dysfunction, and an inability to absorb nutrients. It usually starts soon after birth; in Elliott's case, it has been present since birth. Elliott had multiple surgeries from 1 day old to fix strictures in his bowel. Unfortunately, these were unsuccessful, and they had to give Elliott an ileostomy. Elliott couldn't absorb nutrients in the usual way and has been TPN-dependent since birth. Which is artificial nutrition given via a central line called a Hickman line.

Elliott's condition has no cure and is very rare.

At 8 months old, Elliott had a bone marrow transplant at GOSH. Without this, he would not be here today. Elliott spent the first 11 months in hospital. It took 3 months for the hospital to determine Elliott's condition. Sending biopsies over to other parts of the world to analyse. Elliott has done amazingly to get to 11 years old. We have had a rocky road with quite a few admissions with line infections ( sepsis ), but he has always fought through.

Last December, Elliott caught the flu. Which impacted his liver massively, to the point we needed to be assessed for transplant again. Previously, when assessed, it was more based on quality of life. But we agreed to hold off as the bigger and stronger Elliott would be the more successful transplant. Also, there is a higher chance of finding a donor. Within 3 weeks after the assessment, we were told Elliott would be listed for a multi-visceral transplant, which entailed a stomach, liver & bowel. Elliott was estimated to live a max of 5 years. Meaning he needed a transplant within this time.

Just 10 days later, we got told, unfortunately, things had changed due to multiple things, one being bleeding, which had us admitted into the hospital. We were told Elliott would only have weeks/months; however, if a parent was a match, we could donate part of our Liver & Bowel, but sadly I am not a match Sadly, If we were able to find a doner who is the same blood type and was compatible, it would be possible for him to have this transplant but the outcome of this is not clear and this would not be a fix for Elliott. But again since being poorly this may now not be an option due to not being clinically well enough.

We got home from our admission, and two days later, Elliott was rushed back in with painful pancreatitis. During this time, we found out that a transplant is very unlikely due to the wait and how unwell Elliott has become.

On 8th July this year, while in Addenbookes Hospital, we were given the devastating news that they couldn't treat Elliott any further. This is due to fluid in his lungs and pressure on his heart, with the risk of cardiac arrest. He was being placed on The Palliative care pathway. As you can imagine, no parent wants to or should hear that about their 11-year-old child!

We have found this very difficult to accept and struggle daily.

As a family, we need to be strong for Elliott, and the specialists looking after him have told us to make as many memories as we can while Elliott is still able.

Elliott has missed out on so many of the activities that children his age do. Like joining the local football team and taking residential trips with the school. Struggles to walk/run too far and for too long. He has to be home for TPN to be connected by a certain time to keep his blood sugars up. Endless hospital trips and appointments.

The one thing that keeps him going is his love for West Ham, which is unmeasurable, from watching the game, singing the songs, and following them on Instagram with Mum. He loves being part of the West Ham fan club and recently had a day of training and meeting the team. Ideally, we would like to make all his dreams come true while he can with the support of this page. All funds raised will also be split between Addenbookes Hospital as they have been amazing and given Elliott a lot of care over the years.

Family members are planning fundraising events, so watch this space for more information