Caring for Rhys- A Mother’s Story

“Hi, my name is Jayne and I work as an Operations Manager at Melbury Lodge Hospital, Southern Health Foundation Trust, supporting the Perinatal Mental Health Service the Maternity Mental Health Service and the Mother and Baby Unit.

I have a long history within the NHS working at Queen Alexandra Hospital in Portsmouth, Southampton General Hospital and Dorset County Hospital previously in physical health in both operational and business roles. I am also a carer for my youngest son who was born with a rare brain abnormality. I enjoy working and coming to work for a break from my everyday caring duties, but this is the NHS!

I have two children, my youngest son, Rhys, is 19 and was born with a rare brain abnormality, called agenesis corpus callosum (ACC) and he has also been diagnosed with epilepsy and learning disabilities amongst several other medical conditions that impact his life. Rhys has also, in the recent years, been through many genetic research programmes and has been diagnosed with a rare genetic disorder called coffin-siris syndrome (CSS)

Reflecting over the years of the trauma, of living with such uncertainty, and the unknown of life with a rare and life limiting condition, I am always in awe of how Rhys continues to defy the odds and even attends a special college in Southampton. Having just turned 19, he in a new phase of his life as an adult. This is also a new era for us, as his parents, as we adjust to full time carer roles, which seems odd as we are just still ‘Mum and Dad’. All trying to live the 2point4 family life to the best of our ability.

We have, as a family, been supported in our carer roles by the local authorities and social services and Jack, Rhys’ older brother with young carers. We also have had lots of support with national and international groups for ACC and CSS.

As carers, we have found time out with exercise for our own wellbeing really helps us to have manage our work, life balance alongside our caring duties, and it helps we both enjoy running. We used our love for running to do a lot of fundraising, especially for Starlight Children’s Charity and local hospital charities. However, lately we have rediscovered a new escape in mountain climbing!

We are lucky that Rhys is such a happy and helpful soul and continues to inspire us every day. The irony of this story is that when living in Dorset we accessed Julia’s House Hospice as in his early years Rhys was very unwell and uncontrolled with his epilepsy, and as a result we received respite from this wonderful charity. Today being able to control his conditions, we are full time carers for Rhys. Don’t get me wrong, I wouldn’t change it for the world but having respite is so important and that is why these charities are so important.

Now living in Hampshire, we have become known to Naomi House Hospice through Rhys volunteering there in a local charity shop, with support from the manager. He wants only to be like his big brother, his mentor, so he helps out on a weekend for a few hours. He makes us so proud with his ambition to help and be involved in these charity roles. He has also volunteered with us, his parents, at sporting and music events where we have wanted to give something back to society and charities. We feel so lucky for all the support we have received over the years. We help out with the Southampton Marathon, Winchester Half Marathon, Race for Life, Southampton Sporterium, Camp Bestival, Let’s Rock in supporting Child Bereavement UK to name a few.

A visit to celebrate the Jubilee with the Queen!

The Royal Voluntary Service were made aware of Rhys and his volunteering roles and in turn he was entered into a ballot to win tickets for the Platinum Jubilee, Platinum Party At The Palace and he won!

We were there, on Saturday 4th June 2022, in London celebrating with the nation, except we were sat in the Queen’s front garden enjoying the most spectacular, iconic event- it was truly magical, and Rhys loved it! He said his favourite parts were seeing the Queen meet Paddington Bear, George Ezra singing his favourite song Shotgun and seeing all of the lights around Buckingham Palace. For me Andrea Bocelli stole the show, the only rain that day was from my eyes!

Thank you, Rhys, for making me who I am today, your strength of purpose is truly motivating.

I want to wish all our fellow carers, volunteers and Learning Disability advocates a wonderful month in June, celebrating and raising awareness for the wonderful work that you do to support us carers and our loved ones. I would also like to celebrate everyone living with a disability and all the carers who support them — you are all truly amazing.”