It is with heavy hearts that we ask for your help in supporting our dad during the most difficult time our family has ever faced.

Our dad has always been our hero - the person who has held our family together through every challenge. He has never thought twice about helping others, always giving his time, kindness, and support without ever expecting anything in return. He has spent his life putting others before himself, and asking for help is something he would never do. That is why we are asking on his behalf.

A couple of years ago, our dad was diagnosed with Short Telomere Syndrome, a rare genetic disease that causes the protective ends of chromosomes, known as telomeres, to shorten much faster than they should. This means his body’s cells can no longer repair and renew themselves properly, leading to premature ageing and progressive damage to vital organs. In our dad’s case, the disease has severely affected both his lungs and liver, and despite his incredible strength and determination, we have watched it slowly and relentlessly take more from him with each passing year.

As a hereditary condition, it has also brought an added layer of heartache to our family. Knowing that this disease has been passed on within our family leaves us facing uncertainty about the future, making this journey even more difficult as we watch our dad live with this devastating illness.

Today, he is living with advanced pulmonary fibrosis and progressive liver disease. The severe scarring on his lungs has made even the simple act of breathing incredibly difficult, and due to the significant decline in his lung function, he now relies on supplemental oxygen every day. Unfortunately, he is not eligible for a lung transplant because his underlying conditions would continue to affect his overall health and the long-term success.

His liver disease has caused a build-up of fluid in his legs and abdomen, which suppresses his appetite and has led to significant weight loss. As his body struggles to get the nourishment it needs, it has begun breaking down its own muscle leaving him weaker and more exhausted with each passing day.

Watching someone who has always been so fit, independent, and full of life lose so much of his identity has been devastating for our family. We live with the fear of what the future may hold, but we are determined to do everything we possibly can to give him the best quality of life, bring back his spark, create more precious memories, and make every moment count.

We are raising funds to help provide the essential care and support he now needs at home, mobility aids to assist with independence and easing the financial burden on our family so we can focus on spending precious time together. We also hope to raise funds to cover the cost of a promising medication called Nerandomilast. His doctors have advised that this medication is not yet approved by the NHS and that there are currently no further treatment options available to him. While Nerandomilast is not a cure, we are determined to explore every possible avenue to help slow the progression of his lung disease and ease his symptoms.

Every donation, no matter how small, will make a real difference. Your support will help us provide the care he needs and give our dad the comfort, dignity, and quality of life he deserves.

If you’re unable to donate, we completely understand. Simply taking five minutes to learn about Short Telomere Syndrome and sharing our story could make all the difference. Every person who reads, learns, and shares our story helps raise awareness of this devastating rare condition.

You never know who it might reach or whose life it could change.

From the bottom of our hearts, thank you for taking the time to read our story. Thank you for your kindness, generosity, prayers, and support. Your compassion means more to our family than words can ever express.

With love and gratitude,

His Children

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