Blake's Boston Dream

We want to send a very special boy on the trip of a lifetime and we need your help to do it. Our special little friend is Blake McCaughey and its very fair to say that none of us would want to go through what Blake and his family have had to deal with since birth. We are raising funds to send Blake and his family to Boston, USA for an unforgettable experience.

We have listed below why this is vitally important to us so we would really appreciate any help you can offer.

The funds will be used to pay for flights, accommodation and day trips that can help to make memories for a family who just do not know what the future holds for Blake.

We would urge you to read the information below, this is the reality for a family.

Blake McCaughey is 15 years old. Since being born prematurely, he has experienced a physical life that would crush the spirit of most ordinary people. He has missed a very great deal of what comes naturally and normally to the overwhelming majority of children. Blake suffered pneumonia nineteen times in the first two years of his life. This led to him having to live life ‘nil by mouth’ – no food or drink at all. Blake continued to challenge doctors with his uniqueness as to why his muscles were so weak, his swallow unsafe, his lack of weight gain and growth.

The Reality

For perspective, it is fundamentally essential to understand that Blake’s medical problems are unique and have stretched, to the limit, the fantastic skills of doctors and medical staff in both Belfast and the famous Great Ormond Street Children’s Hospital.

Blakes heart began to give concerns and in May 2017 Blake had open heart surgery where he received a donor heart valve.

Fast forward to May 2019 and Blake was losing weight very quickly, fading away. He could not keep his own body temperature up and his heart and blood pressure where functioning at an exceptionally low level. Blake was being fed by tubes into his jej but nothing was working.

Thankfully, the Gastro team in Belfast took Blake on in December 2019. He was now seriously ill and TPN was the last hope. TPN stands for Total Parental Nutrition and goes directly into Blakes heart through his Broviac line.

Blakes TPN runs for 16hrs a day to keep his body hydrated and supply his body with every calorie, vitamin and mineral that the body needs to keep Blake and his organs alive. Then on the other 7hrs we run all Blake’s replacement fluids through a second port on his Broviac line to replace any additional losses he has from his ileostomy. Every day is a balancing act of replacements versus losses for Blakes hydration.

To connect TPN we must conduct a sterile procedure with two adults twice a day to access Blakes line as the risks of sepsis are huge.

Blake was diagnosed with Irreversible Intestinal failure. The Royal Childrens hospital, Belfast was their home for the next three plus years (with 8 months in Great Ormond Street in between). Over these 3 years, Blake had sixteen surgeries and some very scary times. Blake was now living his life on morphine and cannabis plus other hard drugs to control his unexplained pain. He was constantly crying out for help, but nothing could explain the pain.

Blake had a section of his bowel that was not working and when he sat up, he was obstructing his bowel. So, more recovery and more surgery planned which means Blake can only sit up for 5 to 10 mins at time so in a day he has to lie back for about 23hours.

In Jan 2022 Blake would them get a stoma/ileostomy to allow release of his bowel contents. Unfortunately, Blake was still in a lot of pain even after all these corrections had been made and by this stage had four medical devices in his abdomen. Blake was brought back from Great Ormond Street to recover in Royal Belfast Hospital for Sick Children. They had short periods at home, but it was never for very long until Blake was in too much pain, and it was hospital again.

July 2022 Blake was enjoying a few days in Portrush when he took bowel obstruction again and needed surgery, our surgeon was very clear this was enough to kill Blake, but we had no choice if we left him, he was not going to survive,

Blakes surgeons found a twisted bowel that he had multiple hernias. Thankfully, he was able to fix the mechanical problems.

Blake has now managed to get off all pain medications but again this came with massive problems as Blakes withdrawals where extremely hard and 6 weeks of come downs involving talking to water taps and chewing his own tongue.

As well as being horrendously tough physically, Blake and his mother were separated from the rest of his family. Pre Covid, they could visit but then during Covid, they were unable to be together for months on end. Blake also lost his grandfather during this time.

Since December 2022 Blake has been home but to this day, he cannot sit up for any length of time without his bowel obstructing so he spends 95% of his days lying back/flat. His wheelchair is adaptable to allow him to lie back at an angle that avoids a bowel obstruction.

The Future

Blake has been asked now to attend Birmingham Children's Hospital later this year to meet the transplant team and see if Blake could possibly receive the gift of a small bowel transplant. Firstly, they need to go to meet the team there and go through 2 weeks of tests and meetings. Even if Blake is successful to make the wait list, a small bowel transplant is not like other organs that generally give patients years of stability, they can just stop working at any point. They also come with a substantial risk of Cancer and multiple other issues.

Blake himself

Extraordinarily, given the hand which he has been dealt, Blake is the most loveable, caring, crazy, fun loving 15year old. He touches all who meet him with his total disregard for his own problems, and indeed pain. He loves ice hockey and his team the Belfast Giants, where he is much loved by both the players and fans. His fantastic spirit has been recognised recently by his surgeon in Great Ormond Street, who has put Blake forward for a special award.

The trip

We simply cannot be sure what, or how long the future is for Blake. We have tried against the obvious practical difficulties of his physical needs, and the constant danger of unforeseen health complications, to a make his life extra special. Given the particularly horrible time he has had to suffer over recent years, we see a trip to the States as being the thrill of a lifetime for him, and we are pushing forward as hard as we can with it, while hoping for help from anyone who feels they can assist.

Thank you for taking the time to read this and for any help you may be able to offer.