A nurse and one of her young patients joined Her Majesty The Queen for lunch to help her to decorate the Christmas tree at Clarence House.
Epilepsy Nurse Specialist Teresa McIntyre and five-year-old Maisie Reid were invited by Roald Dahl’s Marvellous Children’s Charity to the special annual event, which took place on Thursday 12 December.
Maisie and her mother Holly, who also attended on the day, first met Teresa two years ago while waiting for the results of genetic tests to explain Maisie’s deteriorating health. She had experienced seizures and wasn’t walking, talking or able to hold anything.
Soon after their initial meeting, Maisie was diagnosed with Rett Syndrome, a rare genetic neurological and developmental disorder that affects the way the brain develops and causes a progressive loss of motor skills and language.
Mum Holly, from Rochester, said: “It was a scary place not knowing what they were going to find or even what they were looking for, and sitting in meeting after meeting waiting for answers.
“But when we met Teresa it felt like we had a friend in our corner, and she’s been with us every single step of the way since.”
Teresa said: “It was obviously hard for Holly and Maisie’s dad Simon to hear Maisie’s diagnosis.
“From that day their lives changed irrevocably. But over the year we’ve worked together and, more importantly, learned together what Maisie’s needs are. Her symptoms can change on a daily basis and myself and Holly will often catch up to talk about this, and about how best we can help Maisie and where we need to go, or who we need to ask for advice.”
Her Majesty The Queen is Patron of Roald Dahl’s Marvellous Children’s Charity which raises funds to establish specialist nurses in hospitals across the country. Their role is to provide bespoke and holistic care for children serious, lifelong complex conditions, by getting to know their family and helping them navigate their complex healthcare journey, often throughout the patient’s childhood.
“I am often the first port of call for the family if there are queries relating to clinical issues in non-urgent situations,” Teresa said.
“I am able to offer advice on medication changes, liaise with other professionals when needed, help support the family to gain necessary equipment, as well as link with Maisie’s school to provide up to date information. I try to be there when Maisie’s family need me, this may be several times per week or may be once every couple of months, it depends how she is doing.
“As a specialist nurse I try to help reduce the number of emergency hospital admissions children with complex health needs, like Maisie, have, as they are vulnerable and prone to picking up infections. Therefore, a lot of my time will be spent trying to make any changes to care virtually, if it is safe to do so.”
Two years on Teresa says it is humbling to be a small part of Maisie’s life.
She said: “Despite Maisie’s diagnosis, she remains a joyful, bubbly and sociable girl who certainly knows her own mind, and you cannot help but smile when you are in her company. That is why I nominated her for the opportunity to visit Clarence House.”
Speaking about how Teresa makes a difference to their lives, Holly said: “Be it coordinating and sitting in on appointments or being at the end of the phone when we have concerns about Maisie’s health, our family life is different because of Teresa.
“She is so hard working, so caring, and so genuine. Before we met her, we felt lost and overwhelmed, but thanks to her we don’t anymore. She really does make a difference to our lives on a daily basis.
“I can’t think of two people more deserving of a trip to Clarence House than Teresa and Maisie.”
Photos provided courtesy of Ian Jones.