Buddy’s Ball raising money for children’s playroom
Join us for this circus themed black tie event on Saturday 25 April at 7.00pm at the Macdonald Botley Park Hotel. Tickets cost only £55, which includes a three course meal and music to dance the night away to.
If you are interested in purchasing a ticket to Buddy's Ball* please email email@example.com or go to www.buddysball.com
*Proceeds from this event go to the G2 children’s neurology ward fund of Southampton Hospital Charity, specifically to revamp the playroom.
Joseph's journey (AKA Buddy)
Mum, Donna Bartlett explains: “Joseph was born at 35 weeks, an unusual circumstance for me as my other pregnancies were always two weeks over! He was originally due on Christmas Eve and was lovingly nicknamed 'Buddy the Elf' by my midwife and our colleagues.
When I was pregnant with Joseph I never felt him move inside me and was monitored twice a week for this. It was hard because every day between I never knew if my baby was ok.
When Joseph was born he had extreme difficulties with his tone and breathing and had to be ventilated. He was looked after wonderfully by the Princess Anne Hospital neonatal team and after two weeks we were discharged home.
My mothering instinct told me that Joseph was 'different'.
He had an unusual cry and was an extremely poor feeder. He wasn't aware of me or his surroundings. I tried to put this down to him being early, but deep down I knew different. Joseph was a very 'floppy' baby and his head was always tilted to the side - it was like a heavy stone!
At seven weeks old I took him to my health visitor who agreed he needed extra input and a week later we were seen by Dr Vollmer (Consultant Neonatal Neurologist) and her amazing team.
So from eight weeks old, Joseph has been a patient of the neurology team and we have had many a stay on the Paediatric Medical Unit ward. Joseph is almost one year old and in his short life he has had many tests, reviews, and electrical testing to name but a few.
The hospital has become a 'second' home to us. Over this time Joseph developed many more symptoms and the seed had been sown to us what the probable diagnosis could be. At nine months old this was confirmed.
Joseph has Congenital Myasthenic Syndrome - a very rare neuromuscular condition which affects only 1 to 2 people in a million. The condition affects all involuntary muscle groups, so eyes, facial muscles, neck, throat, windpipe, lungs, arms and legs etc. It is a life-threatening condition and even a normal childhood illness could be fatal for Joseph.
In his short life, he has already had three exciting rides in an ambulance!
Joseph presents with squints, Ptosis, breathing problems and frequently gags and chokes, sometimes thirty times a week. We are lucky that Joseph can have a medicine eight times a day which helps to enhance his muscle tone. As a family, including his big sisters, we have been choke and resus trained to prevent Joseph from deteriorating quickly. Joseph also has sensory processing problems so daylight, motion and touch can be a massive trauma for him. I think as a family, this is what challenges us the most!
To be honest it doesn't really matter what Joseph has (although to be diagnosed with something so rare at such a young age is incredible and solely down to the care, expertise and intelligence of Dr Vollmer and her team), what matters is that during our stays we have had the privilege of meeting inspirational children and their families, and making friends for life.
Having a child who is slightly 'different' is a world apart from the rest.
I felt as a mum that I really didn't 'fit' into the standard life of a mum and baby, yet at the hospital we feel like we are at home.
Joseph loves his doctors and his nurses (and so do I) and we make the best of our stays.
The playroom has played a fundamental part of our stays and we spend hours in there with the play therapists. The playroom provides a space to escape and many of the children spend months recovering. Often they do not have daily visitors, so it plays a crucial part in the rehabilitation and recovery process.
We hope to raise enough money to help towards completely re-vamping the room; providing a sensory area for stimulation and therapy, a play area and an area for the young adults to escape to, which will be used by Joseph and so many. Alongside this, funds to help purchase vital medical equipment used by the neurology team to aid in the diagnosis and treatment of children with neurology problems.
We as a family cannot thank the team enough. I dread to think what Joseph's outcomes would be if it were not for his early diagnosis. I would be lying if I said it has not been a difficult year for myself, my husband Lewis, and our children, but I cannot express how lucky we feel and the need to give back to the hospital who gave us so much.
The future is uncertain for Joseph, but we will live each day with courage, fun, love and thanks.
We are truly blessed with 'Buddy The Elf' and equally blessed to be under the care of an amazing hospital and its team.
We cannot thank them enough.”
If you are interested in purchasing a ticket to Buddy's Ball please email firstname.lastname@example.org