Devoted Cambridgeshire sister to run 14km for rare GNB1

Maisy McCulloch, has already smashed her original £400 GoFundMe target for GNB1, but is hoping her efforts will raise awareness of the condition, which has affected her brother, George's, neurological development, and led to developmental delays, communication problems and complex medical needs.

Because of its rarity, most people, including healthcare professionals, are unaware of the disorder, and so Maisy has taken the opportunity to raise awareness during April, which is GNB1 awareness month.

 Maisy, who lives with George and her mum Maxine in Whittlesey, describes her 20-year-old brother as an extremely happy, loving, cheeky, and outgoing person, with a big personality and lots of determination.

Daisy has been devoted to George all his life, and is proud to be his sister. (Image: Maisy McCulloch)

George is non-verbal and faces many challenges linked to his condition.

But he is already proving medics wrong by learning to walk against the odds.

Maisy said: "We were told George would never walk, but against all odds, he began walking around our home (When he feels like it!)."

 George is unable to complete any tasks independently and relies on his family for full support. He has a DBS (Deep Brain Stimulation) system in place, which is to try to help with involuntary dystonic movements (which are caused by involuntary muscle contractions).

Maisy explained that George has a feeding tube to help maintain his weight, which is low, because he sometimes finds it difficult to eat.

The rarity of the condition means that although George was born in GNB1, it took until he was 14-years-old to get a diagnosis.

The condition has left George, who attends a specialist facility in Ely five days a week, with the mental age of a two-year-old.

Maisy said he will not develop past that, so his learning capacity is that of a toddler, but he loves watching cartoons, sensory play and music.

Not being able to voice his needs means routine is especially important for George.

Maisy said: "I am George's sister first, and a caregiver for him second, but I do understand the challenges and complications of living with someone with 24/7 care needs, and I love being able to support in giving him the best life he deserves.

"I am heavily involved in his life, and he is an extremely important person to me, so I am happy to speak with anyone to give more information and answer any questions regarding his condition."

Maisy, who will be completing her run around Whittlesey on May 23, with George joining her in his wheelchair for the final five miles, added: "George is loved by everyone that meets him and I always think about the person he may have been without GNB1, however he has an amazing network of people that support him daily.

"As much as we would love to take GNB1 away from him if it were an option, his happiness in daily life assures us that the choices we make for him will always have his best interest at heart, and he is never seen without a smile.

"Caring and living with George can be difficult, but it has given me an amazing perspective on patience, resilience and the importance of small milestones others may take for granted.

"Any support is hugely appreciated, and any donations made will be going to the GNB1 advocacy group, which is based in America and carries out research into the condition.

"Wherever I go in life and whatever I do, I know I will have George beside me. It is extremely rewarding, and there is no greater title than being his sister."