Meet some of our inspirational children, teenagers, young adults and their families.
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.
Anna is 10 years old and has been coming to The Donna Louise for 6 years after having a kidney transplant at Birmingham Children’s Hospital. Her family were introduced to The Donna Louise when Anna started Pertitoneal Dialysis at home and the care team supported them by spending time with Anna days after her transplant.
She comes for respite and day care and accesses counselling and art therapy with Kevin, our Art Therapist. One of her favourite things to do is music therapy with Phil; she has found a love of the drums and even has a set at her Gran’s house now!
Chloe and Charlotte, aged 18 and 19, are great friends who met at the Donna Louise more than five years ago. They love to spend as much time together as possible and regularly co-ordinate their stays at the Hospice. When they’re not together they’re either messaging each other or chatting on the phone.
The two friends volunteered to take part in a video which was shown at the annual Donna Louise Fundraising Ball. We chatted to the girls to find out more about their starring roles, what it was like to be filmed and why they were so keen to get involved.
At 23 weeks Johnny was born prematurely – he weighed just 1lb 5oz. After experiencing a little bleed, we called the Labour Ward at Leighton who told us to come in just in case. We were seen nearly straight away, after a quick examination, we were sat down and told that I was 2cm dilated at 22 weeks ….. what did that mean?
We started to cry, the doctors were quiet, yet I still kept asking the same question … what does that mean?! Still nothing …. Just tears. Then it dawned on me that this was it, I was going to miscarry. We were placed on the ward, I was dressed in a gown, and on a bed of basic linen sheets … it was only a matter of time. The midwives & doctors were so kind, and checked on us regularly. We hardly got any sleep, and I daren’t even move a muscle in case I jeopardised anything.
Becci’s son Lucas is a regular visitor at The Donna Louise, here she tells us why she’s so thankful for your support and what The Donna Louise means to them.
“Up until the age of 14 months Lucas was enjoying life and developing like any other child his age. That was until the 8th July 2013 when he stopped breathing due to a three hour epileptic seizure and had to be ventilated.