Our Care – Hektor’s Story
Hektor is a smiling, handsome and wonderful little boy who fills the world around him with sunshine. He is one of our young patients at Andy’s. We caught up with his mum to hear his story.
Hektor was born a healthy little boy. He, unfortunately, developed life threatening complications when his body did not absorb his routine Vitamin K medication that is administered at birth. This led to Hektor developing Vitamin K deficiency bleeding (VKDB), a condition that can lead to severe bleeding in babies as a result of having diminished levels of Vitamin K. Vitamin K plays a fundamental role in helping blood to clot. The bleeding can occur anywhere on the inside or outside of the body. VKDB is very rare, only occurring in 1 in 14,000 to 1 in 25,000 infants but is very dangerous.
At 7 weeks old Hektor suffered from bleeding to his brain. The doctor’s original diagnosis was not promising and at one stage his family was told that he was brain dead. However, Hektor defied expectations; facing and winning the battle for his life and learning to live with cerebral palsy, quadriplegia and development complications as a consequence of his VKDB.
Nearly 3 years later Hektor is now in a stable condition and is progressing in a way that is full of hope and promise. His mum, Amy, is very proud of her youngest son and is ecstatic to be making memories with him. She says that Hektor’s hobbies include painting, going on the trampoline, spending hours looking at black and white images and that “his best and most beautiful smiles are when he bouncing”.
Hektor belongs to a very strong family unit that is made of his Dad, Mum, his Grandma Lesley (known as Nannama) and his two brothers, Oskar and Erik. His dad is still working full-time for a plumbing manufacturer and his mum works part-time as an anaesthetist assistant. The everyday help and support they receive from his Nannama ensure that the hardest days are still filled with love and laughter. His mum explains that “when Hektor is at home, his brothers are full of giggles and cuddles and Hektor erupts into smiles and shows recognition and joy to be with them”.
Amy does admit that life with Hektor can be hard at times and before his care and support plan was put into place it could be a struggle. She said that it was during this time that the strength of her family was revealed and thanks to the support from external agencies, they are now living the fullest of lives. They manage to go away together as a family for short breaks in a caravan and they are able to give each of the boys the love and support they need. They are particularly excited to celebrate Hektor’s third birthday in August.
Hektor and his family receive support from the medical sector, attending his health appointments and checks as well as respite care. He especially enjoys spending time at Andy’s and his mum is grateful for the opportunity to use these services, saying that if it wasn’t for Andy’s Children’s Hospice and the other respite care that “their lives would be very different to what they are now”.
Hektor really enjoys his physiotherapy sessions and time he spends with his much-loved physiotherapy worker, Christine Jones. Christine is a Physiotherapy Technical Instructor at St Andrew’s Hospice (including Andy’s Children’s Hospice) and has been working with him for three months. She has been working at St Andrew’s Hospice for nearly six years and has a lot of experience in working with children in a position similar to Hektor’s. She says that he is an “absolute sweetie, who works hard to push himself more and more”
Christine explains that they developed an immediate rapport and Hektor quickly established a trust in the routines and exercise programmes she uses with him. She works hard with him to improve his flexibility allowing him to relax in different positions. One of her favourite things is building a trusting relationship with the children, and loves when Hektor and she make each other grin. “he sits on my knee with his back to me and I talk to him constantly whilst helping him move his limbs, he will suddenly half turn, nestle into my neck and grin up at me.”
Hektor is truly an inspirational young boy and he is forming very positive relationships with his family and those around him. Everyone is happy to be with him and appreciate every day they are together. We hope that he continues to prove the doctor’s original diagnosis wrong and keeps enjoying life and making people smile.
If you are touched by Hektor’s story and would like to support St Andrew’s Hospice and Andy’s Children’s Hospice in providing specialist care to other families, you can find out more about how to get involved here.