Please help my son be able to live a better life

Hi there, my name is Katrina and I had a 12 year old son called Connor.

There will be many that know his story and many that do not.

I have lost count of the times I’ve been told you would never know he has gone through what he has. A top kind hide what goes on underneath it.

But here’s his story….

Connor has a very rare condition that he has struggled with since he was 3 years old, possible even before that before him being diagnosed.

I will try and describe it the best I can.

Over the years he has spent most of his life in and out of hospital, had countless trials, medications tests, procedures and operations.

It all started with him constantly being sick. Lots of trips to the doctors and was always told it was a bug, it was a reaction to injections, it was viral. It was none of those.

He was sick every 15/20 minutes for 6 weeks until it was taken more seriously.

He spent a year in the RVI in Newcastle UK where he had an endoscope, transit studies (this found he had the plastic pellets in his system for 17 weeks) in our case we should pass them after 24/48 hours. He was placed with an NG tube for 6 months, due to the sickness getting that bad he vomited the tubes out 3 times in a week until they decided he get a gastrostomy placed in his stomach.

Even with this tube in, it only relieved the times he was sick by connecting a free drainage bag to the tube in his stomach as he couldn’t even keep his own saliva down let alone anything else. During the worst period he ended up on TPN (a tube that provides nutrition straight to the heart as there was no way in getting anything into him).

This helped slightly but didn’t stop the condition.

He ended up having a full depth bowel biopsy to try and get more answers. He also had a lip biopsy done at the same time.

At this point he was very very ill.

They played around with the idea of him going to Great Ormond Street. But then decided that yet another operation could maybe help him. He got an ACE tube placed into his bowel via his appendix at this time they gave him Botox injections in his bowel to make it go to sleep until he recovered from the operations.

The idea behind this was so they could flush his bowel out every day with 1000ml saline in through the tube with him sitting on the toilet.

At this point he was able to come of the TPN and be fed via a pump into the peg in his stomach, during the ok times he would carry this around in a backpack.

He also has problems with his bladder and not feeling the sensation to go like we would.

He has urine flow studies done and ultrasounds and found out it may all be linked.

At the end off all this they found out that he has severe delay gastric emptying of the stomach, the same with his bowel, basically without getting to technical, it’s like his stomach and bowel goes to sleep and stops working and in the good times is empties very slowly.

There is no name for what he has and he is one in a few children in the UK with this condition. Because of its unpredictability. We never know when he is away to go into a bad phase, it just arrives and we deal with it the best we can.

They do not know how to treat his condition but can treat the symptoms that is creates.

As the years have gone on with him in and out of hospital, he suffers with bad anxiety. I went into his bedroom one day to find him crying (8 years old at the time) and begged me to let him just die as he cannot take this anymore. He even wanted to kill himself. He always told questions “why me”. I find this very very heartbreaking and feel so helpless as there is nothing I can do to take this away from him. (He does have a child psychologist to help him).

He does have an amazing medical team in Ninewells Hospital in Dundee that have helped him so much over the years for which I am very grateful for.

However I believe there is more answers out there for him and found a Doctor that specialises in his condition alone. However this is in another country and very pricey. I have discussed this with my son and he is happy to try and get more answers on the chance that he could have a better quality of life.

This is all very hard to watch him go through all he has in his short time he has been here so far.

This is the part where I need the help from others to try and help me raise the money to be able to help him hopefully get the answers or make his life more tolerable.

So if anyone is able to donate anything towards this, that would be very appreciated from us as a family.