Five year old Maisie Reid from Kent has a condition called Rett Syndrome (Image: Reach/Steve Bainbridge)
A Super-brave little girl of five has amazed her family in the way she has coped with a severe neurological condition.
Maisie Sparks has battled seizures, breathing difficulties and has had to overcome being unable to walk, talk or pick up or hold things.She has a condition called Rett Syndrome which affects all aspects of her life and can never be cured.Maisie’s mum Holly 35, and dad Simon, 33, are proud of their “bubbly” little girl who in spite of her condition loves music, people and being taken to the beach,The family’s lives were transformed two years ago when a specialist nurse from Roald Dahl’s Marvellous Children’s Charity was assigned to help them.
Maisie Reid, five, has amazed her parents with her courage (Image: Reach/Steve Bainbridge)
Holly first reported early signs of concerns at Maisie’s routine one-year check-up. Maisie, she says, was talking and using her hands then, but not hitting the usual milestones, including in the development of her speech.
Holly was devasted when the doctor suggested poor communicationas a mother might been causing a developmental delay, which she knew couldn’t be true.
It was only when Maisie started blanking out, staring into space for long periods, and was taken to A&E that medics felt they should do additional tests. The family learned much later that the incident was in fact Rett-related epilepsy.
Holly says: “It was a scary place then, not knowing why Maisie was so poorly, what they were going to find and what it would mean.”The epilepsy, the developmental delay, the genetic testing. I think at that one-year check-up they sowed the seed that it was my doing and my fault.”I remember tears streaming down my face and not knowing the answers in these early stages, not understanding what they were looking for.“Your mind goes into overdrive and the tears keep coming. Was it the birth? Is it me? Is it something I’ve done?”I am not sure how we got through it, test after test and then sitting in meeting after meeting asking for answers and the help we needed.”
There was one day and one meeting where things changed for the family just before Maisie’s third birthday.A Roald Dahl Nurse called Teresa McIntyre was sitting alongside the consultant at a hospital appointment.Holly said: “It felt like things changed then. In that moment. She just had a different approach. She was asking questions I wanted to ask, or picking up on something I’d said or asked and making sure it was given attention.”She worked relentlessly to get the genetic results so we could have a diagnosis and better understand what was going on.“It was from that day, that first meeting, that it suddenly felt like we had a friend who was fighting in our corner, Maisie’s corner. And from that day that’s been the case. Teresa’s been there every single step of the way.“She is with us in appointments, and drives the discussion, finds the answers we’re looking for, and co-ordinates all the support we need.”Teresa is one of more than 150 Roald Dahl nurses caring for over 36,000 children in NHS Trusts across the UK.The nurses are funded by donations to Roald Dahl’s Marvellous Children’s Charity which is the Daily Express’ Christmas Appeal this year.The nurses care for children and families living with some of the most serious and complex lifelong health conditions.They get to know each family and help them deal with serious illness both at home and in hospital.
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Holly said: “Maisie’s life and our family life is different because of Teresa.“Before we had her we felt lost – like we were in a dark place and a strange country where no one else was speaking the same language – and we don’t anymore.”Now I can call Teresa and say, ‘Maisie doesn’t seem right today’ and she’ll ask me to send a video and give me a call.”Or when Maisie is admitted to hospital – as she was last week when she was having epileptic seizures which can feel so scary – I call Teresa and she appears, looking for us, asking if I’m alright, joining in meetings with doctors, inviting me to have a chat over a cup of tea.“I have given up my job to care for Maisie full time, and Teresa directed me to the charity’s Marvellous Family Support Services who’ve helped us access the benefits we need to manage.“You are seeing so many doctors each time and they don’t know Maisie, so you want to have an expert in the room who does know her and her history, and who will fight for what is best for her, explaining everything along the way.. “That makes a difference that is hard to describe. I don’t know if those who donate to this charity can possibly understand how transformational their support is.”We’re not talking once in a while. This makes a difference to us every day.”
Maisie loves to spend a day at the beach (Image: RDMCC)
Holly says: “Maisie is a lover of life, loves movies and music and – when she’s feeling low – trips to the beach with her teenage brother Harry and pet dog Buddy where everything about being by the sea seems to make her feel better.”Maisie is never happier than when she is on the beach, by the sea. All her worries – and so all our worries – seem to lift when we are there.Teresa McIntyre, Maisie’s Roald Dahl Nurse said: “In spite of all she has to deal with, Maisie remains a joyful, bubbly and sociable girl.”She is so resilient, and certainly knows her own mind, and you cannot help but smile when you are in her company. For me it is humbling and a privilege to be a small part of her life.”The charity’s CEO Louise Griew believes Roald Dahl Nurses not only help families but have a positive impact on the NHS.Louise said: “This happens in so many ways. For example, by reduced visits to A&E, reduced time in hospital, earlier return home from surgery. This provides value to the NHS and everyone who uses the service.“We are really proud, too, of the way the nurses are able to share their expertise in this person-centred care with colleagues who they work with.“However, there is an urgent need for many more Roald Dahl Nurses.”
Marvin the Crocodile is the charity’s mascot (Image: RDMCC)
Kath Evans, Director of Children’s Nursing at Barts Health in London and a Roald Dahl’s Marvellous Children’s Charity Trustee.
Roald Dahl Nurses offer a different kind of nursing that makes a difference not only to families like Holly and Simon’s but to everyone they work with in the NHS.I’ve supported Roald Dahl’s Marvellous Children’s Charity since its early days after meeting and working alongside a Roald Dahl Nurse where I was based at a hospital in North London. Parents like Holly tell the story of the compassion they’re shown and the impact they have so beautifully, and Roald Dahl Nurses always say they feel humbled when the thousands they support share stories like this one.I’m involved in recruitment of Roald Dahl Nurses and I know they can deliver the care they do because of their skills, specialisms and experience. They are experts in their field and they also know how battle-weary families can become. How as they travel on this journey, their time consumed by the care they give and the appointments they attend, their voices can be quieter, the lives they lead and challenges they face hidden away. When we recruit Roald Dahl Nurses, we not only look for that specialist expertise the nurses need, but also that ability to walk this road with families in a compassionate way so they can support them through the most challenging of times, advocating and championing their children.Roald Dahl’s Marvellous Children’s Charity raises funds to establish and embed these Nurses into NHS Trusts so they can work with families like Maisie’s, and they might have dozens of children in their care at any one time. But crucially it allows NHS Trusts where they are based to learn from this approach and see and feel the benefits it brings – not only to the families they care for, but to the NHS where they work. As the number of children diagnosed with serious illnesses is on the rise, we need Roald Dahl Nurses to help shape the future. You can be part of this story, and the differences these nurses make to us all.
How to donate:
Every £1 you donate to Roald Dahl’s Marvellous Children’s Charity will be doubled up to £30,000 thanks to a generous group including Brioche Pasquier UK.By post: Make your cheque payable to Roald Dahl’s Marvellous Children’s Charity and send in a stamped envelope to: Roald Dahl’s Marvellous Children’s Charity, 17 Chiltern Business Centre, 63-65 Woodside Road, Amersham HP6 6AA.Please do not send cash. If possible, please enclose a short note with your contact details and a few words about your donation so we can thank you personally and, if appropriate, get in touch to ask if you’d like to complete a Gift Aid Declaration from.Online: To donate instantly and securely, please visit .By telephone: Call our Supporter Care Team on 01494 890 465.Our donation lines are open Monday to Friday 9:30am-4:30pm. Out of hours, please leave a message and we’ll get back to you.Or: Text NURSES followed by your donation amount to 70470.Texts will cost the donation amount plus one standard network rate message, and you’ll be opting into hearing more from Roald Dahl’s Marvellous Children’s Charity.If do not wish to hear more from us, text NURSESNOINFO instead.If you have any questions please email our Supporter Care Team at .Whichever way you choose to donate, if you’re a UK taxpayer, you can increase the value of your contribution by 25% at no extra cost to you through Gift Aid. Thank you.