Meet some of our inspirational children, teenagers, young adults and their families.
Isaiah Gordon was just four months old when he had his first seizure, and soon after, it was confirmed he was suffering with infantile spasms, a type of seizure disorder. But this was only the beginning for Isaiah and his mum, Naomi...
“The first time that we heard of The Donna Louise was when our Consultant told us that Mckayla was not going to survive. We were given the choices of leaving Mckayla in hospital, taking her home or moving her to the hospice. We knew straight away that the first two options were not what we wanted, so she arranged for us to come straight over and view the facilities and speak with the team at The Donna Louise.
After Cian’s respite stays at The Donna Louise, he proudly takes his newly-collected Moment Beads home to show his mum, Sarah. It’s a special moment together as she gets to see what fun things he’s being doing.
Until the day they lost their three-year old son, Tommy, The Smith family from Tamworth hadn’t heard of The Donna Louise. Tommy’s parents, Martin and Sharon, and big brother, Matt, share their story . . . .
Little Oscar may have undergone two bouts of emergency surgery in the last year alone, but he is still a bundle of fun. The bubbly five-year-old loves coming to The Donna Louise and has been a frequent visitor since he was just one year old.
Chloe was born a perfectly happy and healthy baby until she reached 2 and a half. After contracting an unknown virus, she was quickly diagnosed with Transverse myelitis, an extremely rare and devastating condition which affects the spinal cord, and given just two weeks to live. Chloe is one of seven people in this country to live with the condition.
Now aged 19, Chloe has continued to defy doctors’ expectations; with the support of her family, friends and The Donna Louise, she has grown into thriving and independent young adult. Despite being paralysed from the neck downwards, Chloe recently made the brave and exciting decision to leave home, as many other 19 year-olds do.
Kayla was diagnosed with fluid on her brain whilst she was still in the womb and the doctors said she would not survive birth. Her mum, Claire, was devastated and prepared herself for the worst. But Kayla proved them wrong, she survived birth and today she is a bright, cheeky 6 year-old.
She can’t communicate but she’s clever and babbles away. She also has a mischievous streak! She is stronger than anybody expected. But Kayla has lots of medical problems and has been admitted to the Paediatric Intensive Care Unit many times in her short life. As well as Congenital Hydrocephalus Kayla has Schizencephaly, a rare birth defect which affects brain function. She has numerous development delays, epilespsy and feeding problems. She is fed through a tube and has a Gastrostomy for her medicines. She takes a bewildering amount of medication each day to manage her conditions and prevent her seizures.
