Jessie May Trust Respite Day and Family Fun Day
Clarke Willmott Clinical Negligence Team volunteer for The Jessie May Trust
The Jessie May Trust, is the chosen charity of the year for Clarke Willmott LLP and provides care, respite and assistance to children with terminal illnesses.
This vital service is primarily focussed at children born with severe and life limiting disabilities, who are not expected to live to adulthood and for whom there is no realistic prospect of cure.
Anna Neil comments –
“It was amazing to see such profoundly disabled children have the opportunity to engage in and enjoy music. It was a privilege to help the nurses who look after these children and to be so hands on with their care. I gained a far better understanding of what Jessie May is involved in and I feel that it has deepened my understanding of children with profound disability. I will take from this experience in my on-going work acting for children who have suffered a disability due to birth injury”
Georgina Baxter, Trainee Solicitor prepared an account of her day:
One Day at Jessie May:
As someone whose experience with dealing with terminally ill children amounts to a sum total of 2 hours when I was 14, I was incredibly nervous and unable to imagine how the days events would unfold when I signed up for a young adult respite day at Jessie May.
As soon as I arrived I was made welcome and the days plan was explained. We were each assigned to a young adult and a carer and would spend the day helping out where we could, whether that was with feeding, observing how they are changed or just making sure the young adults were happy and comfortable.
I was introduced to 16 year old girl (S) who suffers from Rett syndrome, something I was unfamiliar with but was told it means she suffers from seizures, repeated hand movements and will deteriorate future. S arrived in her wheelchair, armed with supplies for the day, a care pack which details what foods she needs, what particular aspects of Rett she has and quite simply what to do in a worse case scenario. S is a beautiful young lady, who could not speak or walk. She sat hunched over twisting her hands and would often become vacant, an apparent sign of a seizure.
Her carer took me along when she was changed, I watched them use impressive hoists to manoeuvre S’s small body onto the change mats, at no time did she appear distressed or uncomfortable. We then went down to the main room where her carer and I began a pampering session. I painted S’s nails and added sparkling jewels; I then painted her face with a butterfly, heart and star. During the face painting her carer helped her finger paint a bear template which would later be cut out and given to her mother. S was incredibly calm and patient during her beauty treatments and the whole experience was quite therapeutic! After I had finished the butterfly I looked down and saw she had created a piece of artwork, I was so engrossed in my painting I did not notice how creative S was being!
I then watched S being fed, for now she can have solid foods but this is not something she will always be able to do. A tiny tube in her stomach allowed her to drink water through a longer tube, her face slightly changing when the cold water flowed. Feeding S was a calming experience; the nurses were familiar with her eating patterns and kept a steady pace throughout.
It was then on to the music room. I probably spent the next half an hour with my mouth wide open watching two men help a disabled girl create melodic sounds. The two men, known as Drake Music have been working with terminally ill children and young adults for a number of years. They use modern technology to enable everyone, no matter what their restrictions may be, to play instruments. A large button was placed by S’s hands and every time she moved them in her usual circular way, the button would be pressed and start playing a harp. The button could be changed to any sort of instrument, including a saxophone and trombone. As S cannot move her head too much a machine was attached to her head rest which picked up on any small movements she made with her head and her eyes, each time movement was sensed a stringed instrument would sound out.
Once S was comfortable with the machines, the men joined in with their own musical instruments. S was at one point being serenaded by a rather handsome man on the guitar. Known for being a bit flirty, S’s face lit up and the music seemed to flow more and more, louder and louder.
The day was finished off with a group jamming session and we could all see how each young adult played their instrument, microphones were given to the singers, rattles were shook, drums were beaten and S kept the beat going with her button and sensor. The noise was incredible and it was amazing to see all of the mechanical instruments in action. Some of the band members even continued their musical solos once the final beat had been sounded, a clear sign they thrived on being in a band!
S’s mum then came to pick her up at the end of the day, kissing her and saying how much she had missed her. Waving her and S off I thought it was so nice to see not only the unconditional love of a parent, but the love provided by those who only see you on rare occasions.
Jessie May is constantly striving to improve their respite days but having observed for only a short period of time, they already have something truly remarkable and I urge anyone to go and witness their work. I cannot describe the feelings I felt that day as they were so mixed, varied and complex. My feelings when I left though were ones of respect and admiration. Long may places like this continue, providing happiness to those who are terminally ill, respite for families and enabling people to take part in a charitable project.