Putting Sharna first
Despite being diagnosed with incurable Rett Syndrome, Sharna Beeney's parents make sure it doesn't hold her back. Kelly August found out how, with a little help from our Learning Disability Team, she's setting sail for success.
The last two years have been difficult for everyone. None more so than those who have had to isolate during COVID-19.
For some of us, this has meant not seeing friends and family for quite some time and even not being able to go to work. For mum Juliette it has meant a complete change of routine in the care for her daughter Sharna, 23, and at times a feeling of complete despair. Thanks to Tracey Rose of the KCHFT Learning Disability Team, Juliette was not alone.
Juliette, from Herne Bay, said: “The very nature of Rett syndrome means we have contact with a number of health and social care services. During the past two years particularly, Tracey has stood out as a great support to me. She has helped sign post me to not just health services but support teams who could help regardless of lockdown. She has gone above and beyond her role to help us.”
Sharna was diagnosed with Rett syndrome at the age of three. Juliette and her husband began to see some changes in her development and raised concerns with their GP. Since then Sharna’s family has done all they can to make sure her disability has not held her back.
“Sharna comes first, her disability comes second. Why should she live a life not doing the things normal children do? Growing up, she was a normal teenager. She went through a ‘Goth’ stage, she colours her hair, loves having her nails done and absolutely loves staying active. It’s not easy, but we have always found a way.”
Before COVID-19, Sharna regularly visited the theatre to satisfy her love for musicals, something her mum is more than happy to join her on. She has even climbed the 02, a feat many couldn’t manage but even though Sharna is confined to a wheelchair, she has experienced more than most do in a lifetime.
Sailing is also Sharna’s passion which is shared with big brother Jonathan from an early age. Now Jonathan sails the oceans as part of the Royal Navy and Sharna continues to sail anywhere she can.
“There were many times I was worried about getting her safely into the boat, or the weather conditions, but when you turn to see the smile on her face, you know it’s worth it! We travelled to Moat Park on one occasion to use their boat designed for the disabled. Unfortunately, it was out of action when we arrived. Six of the sailing team decided there and then they wouldn’t let our visit go to waste. They all worked hard to get us onto one of their boats so Sharna could enjoy the water.”
It’s Juliette’s determination that sparked Tracey to recommend she join KCHFT’s Triangle of Care (ToC) project group. ToC is a commitment to a working partnership between the patient, professional and carer to support recovery. KCHFT started their ToC journey in the Autumn of 2021 and is the second trust in Kent and Medway to make the commitment.
As an existing carer, it’s Juliette's essential personal knowledge which will help to improve others experiences.
“As Sharna’s carer, I know the early signs and symptoms of stress or illness which can help the doctors and nurses treat her quicker causing her less disruption or even preventing the need to be admitted to hospital. It’s important I am listened to and included in her care which is the basis of Triangle of Care. Tracey has been amazing at listening to me, but it’s not the same everywhere. ToC will help. It’s not the answer to everything but it’s a great start and I’m pleased to be part of it.
“This isn’t just about Sharna, it’s about everyone. I don’t support Sharna to get into a boat to sail just for her, it’s also to show others they can do it. I’m not getting involved in ToC to help Sharna and myself, I’m doing it for all carers who need to be listened to.”
They know 2022 will see new experiences for Sharna and Juliette - it won’t be plain sailing but it will be worth it.
What is Rett Syndrome?
It is affects around one in 12,000 girls born each year and is only rarely seen in boys. Rett syndrome is usually caused by a fault on a gene called MECP2 which is found on the X chromosome.
Some children with Rett syndrome are affected more severely than others. Also, the age at which symptoms first appear varies from child to child.
At first, the child may appear to develop normally for at least six months. From around the age of one, they may begin to appear to lose some of their development abilities. Their symptoms will change as they get older.
