Waiting for a phone call that will change Harry’s life

To be able to wake up in the morning with energy after a proper night’s sleep, to not itch all over and to be able to eat food through your mouth- seems like a fairly reasonable request right? Well for Harry, only 3 years old, none of this is possible.

Harry’s parents, Eileen and Trevor Booth, have had an intense 3 years with their youngest son being so ill, his older brothers, Tom and Jake, have also suffered through this tough time.

A difficult start to life

Not only was Harry born 32 weeks prematurely which caused breathing issues, he also had 9 surgeries within the first 6 months of his life. His bladder flooded when he was in his mother’s womb, and he had to have bladder surgery with several tubes being inserted into his kidneys to drain them.

Because of the immense amount of surgeries he had to be on life support to allow his body to rest during this period. Harry is now on the wait list for a new kidney.

Although he has endured some physical development issues, mentally his mother says he is “very switched on, with a wicked sense of humour”.

For someone who doesn’t get to eat properly, he now has a peg and knows everything there is to know about food, with a particular fondness of chicken nuggets!

A special brotherly bond

Harry’s oldest brother Tom is very aware of his condition, and shows an unprecedented amount of support for a 9 year old. He came home to Eileen one day begging to take Harry in for show and tell, which of course they did.

“You could tell Tom was very proud of Harry and loved letting the other kids know about his condition. Tom doesn’t usually say much but I could tell he was proud and enjoyed the show and tell” says Eileen.

Finding Harry a kidney

The happiness that the family has in their life together definitely remains strong, but it is undoubtedly hard, especially waiting for the call assuring them that Harry will receive a kidney and get better.

“We’ve been on the transplant list for two years, two years waiting for a kidney and it’s restrictive, it feels like we’re constantly waiting for that call” says Eileen.

The family are now at the point where they will try anything to help their little boy get better. Harry’s father, Trevor, is waiting to receive test results to see if he would be an eligible donor to give his son one of his much needed kidneys. Although it would change Trevor’s life drastically, the parents will do anything to ensure Harry’s future health.

“If we can get a kidney, Harry’s life will change. For him to wake up in the morning and feel energised, to not be connected to a machine, to not have to eat out of tube, to not be itchy or scratchy, it would be amazing. It will honestly change and save his life.”

When we asked Eileen what it’s like for Harry, she said it was difficult to explain, but almost like having the flu every single day of his life, only worse. She has spoken to other mums whom children have received a kidney, and they have all said they see a dramatic change, especially in their child’s energy levels. “It’d be a new lease on life, Trevor and I want that for Harry more than anything”.

Much needed support

Supported by Very Special Kids, Eileen says she is particularly grateful for their Family Support Worker, Peggy. “Initially it was really hard for me as I find it hard accepting help but Peggy helped me break down these barriers and know that it’s ok to ask for help. She’s been amazing.”

Eileen also attends Very Special Kids coffee mornings and says “it’s important to debrief with other families in a similar situation. I can’t speak highly enough of this support.”

Despite Harry’s uncomfortable condition, his family says he is always smiling, and always laughing. We believe this is because his family loves him so unconditionally, and have promised him the best life they can possibly give him, the Booth family are a true inspiration to all families alike.