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Harry's Story:

Harry is only seven years old and already he's been through far too much than anyone should have to in their lifetime. At two days old, Harry underwent an eight-hour life saving surgery to reconnect his stomach and bowel (Duodenal Atresia), then at 11 months old he yet again had another life changing surgery to reconstruct his whole skull as his brain was under severe pressure (Craniosynstosis). A few months after recovery from his skull surgery, Harry underwent three other minor surgeries to correct health issues caused by the duodenal Atresia condition at birth. Not long after Harry's third birthday, it was now time to try and mend his kind heart. Harry required another life saving surgery, this time open heart surgery due to his cognitional heart disease (complete AVSD). The next three years consisted of many hospital appointments at Birmingham Children's Hospital, where Harry has had all his surgeries at, and they kept a close eye on him as he continued to grow. Unfortunately, at six years old the pressure had returned on Harry's brain but more severe than his first skull reconstruction at 11 months old, as this time he had also developed a Chiari malformation and a build up of fluid on his spine (a Syrinx). Following this devasting news, Harry underwent another 5-hour skull surgery to fit distractors to his skull (rods coming out of his skull), including removing bone at the back of his skull to try and release the Chiari. The purpose of the distractors is that you turn them twice a day at home to expand Harry's skull. Sadly this most recent surgery did come with major complications. Five days after returning home we noticed clear fluid coming from the left distractor fitted to Harry's skull, this was due to the left distractor piercing a hole in this brain and resulted in, yet another skull surgery and a lengthy hospital stay.

Despite all of Harry's health issues, many of which are extremely rare, he never stops smiling, is full of energy, loves playing sports, going to beavers and gaming. He never lets his health define him nor hold him back, never once has he complained about the lengthy hospital stays, scans, blood tests, reviews, etc, he just accepts this is the way his life is and simply just 'gets on with it'. 

Harry is an inspiration to us all and although life get very challenging at times, we wouldn't change him for the world. Harry's health impacts on us all as a family, especially his loving big sister Lily (who is 10 years old). When a member of your family has consistent health battles, the stress and worry is overwhelming, the unknown is daunting, the future is blurred and family life that others may take for granted becomes very stressful. With unconditional love and support from our family and close friends we see hope.

On our journey since Harry has been born we have been fortunate to be invited to numerous events organised by When You Wish Upon a Star and most recently having Harry's wish granted. Through the kindness of this warm hearted charity, it has given us chances to make magical memories as a family,