Maddison’s Story

Getting home from hospital.

Maddison was born in August 2008, full term, at a healthy weight and apparently with no problems at all. Shortly after she was born, she was diagnosed with talipes (club foot) but her parents were reassured that this was an orthopaedic problem, which could be resolved with physiotherapy and possibly surgery. Then Maddison’s Mum, Lidia, started to notice other things about Maddison, which were a little concerning. Maddison had a very feeble cry and didn’t seem to be moving her toes, stretching her feet properly or demonstrating a walking reflex.

Shortly after Christmas 2008 when Maddison was only a few months old, she contracted Respiratory Syncytial Virus and needed to be admitted to hospital for oxygen and a feed tube. After a few weeks, although much better, her breathing still didn’t seem right and in February, doctors told her parents that they had discovered an abnormality with Maddison’s diaphragm, which they believed could be rectified with surgery.

Over the next few months Maddison remained in hospital. Throughout this time, although clinically still very poorly, Maddison caused confusion by her cheerful disposition and ability to thrive despite being in and out of intensive care.  Therefore on May 20th it came as a dreadful shock to Lidia and Jamie when they were given a diagnosis of SMARD (spinal muscular atrophy with respiratory distress) for Maddison.

Nurse Rachel and Maddison

Over the next few years Maddison has continued to thrive and exceed all expectations. She overcame concerns that mainstream school might be too much for her, attending along with all her peers and keeping up her stamina. Since then she has been able to eat without a feeding tube and even has up to three hours a day off her ventilator. Maddison is doing well at school and she can propel herself independently using her special walking frame.

Maddison still needs 24/7 specialist care and the support of her ventilator is crucial. WellChild Children’s Nurse, Rachel provides vital support for Maddison and her family in ensuring that any concerns with equipment, training for new carers or worries over Maddison’s breathing are addressed swiftly. Rachel liaises with Maddison’s school and carers, rushes over with a replacement ventilator when Maddison’s equipment shows signs of malfunctioning and provides constant expert reassurance to the whole family. This continuous monitoring, specialist advice and ability to intervene really quickly can make the difference between Maddison having to go to hospital or staying at home.

Maddison has proven that if she’s given the chance, through the medical and other support she receives, she can thrive and get the most out of life just like her siblings and school friends.

“It’s terrifying all of the processes of taking a seriously ill child home, but Rachel is fantastic and friendly; she makes you feel like everything’s going to be ok.”

Lidia, Maddison's mum.