Your stories
8th November 2024
"Your donation or fundraiser can help Shine continue to give support to those who need it, just like us. Please support Shine this Festive Season to help them provide vital support to even more people facing the challenges of living spina bifida and hydrocephalus."
Meet the wonderful McCrum family from Northern Ireland, whose journey has been marked by resilience and love. In 2021, they welcomed their son, Charlie, who was born with spina bifida myelomeningocele, a complex congenital condition affecting the spine and spinal cord. Despite the challenges that come with caring for a child with unique medical needs, the McCrums have embraced every moment with unwavering strength and warmth. Their path has been made easier through the invaluable support of Shine.
“We had a contact number directly to Marie from Shine in Northern Ireland and she was unbelievable, she helped us through that time of our lives where we felt very lost and had so many fears about what the rest of our pregnancy would entail and life with a child with spina bifida.”
I’m a Mum of 2 boys, Charlie being my second and we live in Lisburn in Northern Ireland. We went to our 20week scan in 2021 thinking we were finding out the gender of the baby, but things took a turn when the midwife said she had found something that looked like a hole at the bottom of his spine which needed to be double checked! It all went very quickly from then and was the worst time of mine and my husband’s lives. We were at numerous appointments every week and during one were given several options of how to proceed with the pregnancy one of which was to go to Belgium for fetal surgery. We took this option and flew to Belgium, this was roughly 5 weeks after finding out about Charlie’s spina bifida. Luckily Charlie’s legion was so low and small that the surgeon decided that surgery wouldn’t do much for him and we could go home and continue the pregnancy without intervention!
3 years later and after being told there was a possibility he wouldn’t be able to walk he is a boisterous boy who runs everywhere!! Although his spina bifida has affected his bowel and bladder control requiring catheterisation and suppositories daily to help him we are grateful for his progress!
Charlie is currently in Little Rays Pre-school and is thriving! He loves going outside to play and dressing up, especially as a superhero! His best friend is his cousin Arthur who is like another brother to him! Charlies big brother Archie is so supportive and has always been inquisitive about his condition, we know that he will always be the protective big brother!
"Shine was there for support and information whenever my husband and I needed it. We had a contact number directly to Marie from Shine in Northern Ireland and she was unbelievable, she helped us through that time of our lives where we felt very lost and had so many fears about what the rest of our pregnancy would entail and life with a child with spina bifida. Marie also linked us in with other parents who had been through the same as us and who we wouldn’t have had the chance to speak to if it wasn’t for Marie and Shine.
When Charlie’s spina bifida diagnosis was confirmed, hospital consultants introduced us to Shine. I was overwhelmed by the news; it took some time to come to terms with the diagnosis. Eventually, my husband made the first contact, and we were incredibly grateful for Shine's support and guidance. Marie was a lifesaver, answering our countless questions about spina bifida and what to expect with patience and expertise.
"Although we've been fortunate to need Shine primarily for early advice and support, I'm aware of the invaluable services they provide to families dealing with more severe cases of spina bifida and hydrocephalus. I can’t imagine how we would have navigated the diagnosis and first few months of Charlie's life without Shine!
By donating to Shine, people are directly helping families like us who face the challenges of spina bifida and / or hydrocephalus."
Make a difference to our members’ lives by spreading a little ‘shine’ this Festive Season!