Often families chose to fundraise for us as a way to say thank you for the care and support their loved ones have received in our hospitals, like Mark Potts who is running the Great North Run to say thank you for the care his daughter Maeva received after she was born.

“We welcomed our beautiful daughter, Maeva into the world in May 2022. She was born full-term by caesarean section and Maeva’s mam Zoe had a normal pregnancy.

“When she was around seven minutes old, Maeva stopped breathing and was rushed away from us to receive emergency treatment. Thankfully, Maeva was ok, and we were able to see her again shortly after. We were told Maeva was born with a condition called Pierre Robin Sequence (PRS), which has three main features, a small lower jaw, backward positioned tongue and cleft palate, all of which can contribute to compromised airway.

“We spent two weeks in special care with Maeva where we learned how to care for her and learn about her condition. We had lots of training, before she was well enough to go home, including nasogastric feeding, oral suctioning and paediatric CPR. In the time spent on special care, we were referred to ophthalmology at the RVI and we later learned Maeva has bilateral microphthalmia, meaning both of her eyes are abnormally small and coloboma, meaning some of Maeva’s eye tissue is missing. Maeva was registered severely sight impaired (blind) at 13 months old.

“Maeva developed seizures when she was eight weeks old and an MRI scan of her brain showed she had a structural brain abnormality called polymicrogyria, which means the folds on her brain are a lot smaller and she has more of them, compared to a typical brain. We were also told she has periventricular heterotopia grey matter, a condition in which nerve cells do not migrate properly during the early development of the fetal brain, leading to seizures. As a result of Maeva’s brain abnormality, she was diagnosed with epilepsy.

“With the support from her Neurology consultants at the RVI and regular medication, thankfully for now, Maeva’s seizures are under control.

“Maeva has an unsafe swallow so is completely nil by mouth and reoccurring chest infections have led to many stays at The Great North Children’s Hospital. She was nasogastric fed since birth but in July 2024 she underwent surgery for PEG insertion and we will now continue this method of feeding for the foreseeable future. She is on a strict blended diet ensuring she receives the correct nutrients and calories needed. All of Maeva’s medications are also administered via her ‘Magic Button’ (PEG).

“Maeva is now three years old. As parents, we were truly devastated to learn of our daughters’ conditions. We still do not know whether our daughter will ever walk, talk, sit up independently or how much she can or cannot see us. Despite Maeva’s struggles, she has faced every challenge that life has thrown at her with incredible strength, we are so proud of her for this. Maeva is well-known for her cheeky smile, not to mention her wild curly hair!

“I am running this year’s Great North Run for The Great North Children’s Hospital and I plan to raise as much money as possible not only to give something back after the invaluable support they have given my daughter since she was born and to raise awareness about Maeva’s conditions, but to also make my daughter proud.

“I am extremely proud to be Maeva’s Dad, she will be the one that keeps me going on Great North Run day and will be my biggest supporter on the sidelines.

“I would like to personally thank Maeva’s support teams at The Great North Children’s hospital, for keeping my daughter safe and for teaching us as parents everything there is to know about her conditions and how to best manage them. We have seen first-hand how hard working, caring and compassionate the staff are. When we have felt rock bottom at times, we have always felt supported as parents often spending long periods of time in hospital. We will always be eternally grateful for the support you have given our daughter, Maeva and to us as parents. THANK YOU.

“A special mention to Maeva’s support teams: respiratory, neurology, genetics, ophthalmology, cleft team, orthodontist, cardiology, neuromuscular, children’s surgical team and of course, all the nurses, doctors and support staff on the children’s wards. You are all amazing!”