The Charlie Cookson Foundation

Louie's Story

Our 2nd CCF Family

Louie Bull – Our 2nd CCF Family

Louie’s problems became apparent when he was just five months old. After attending numerous hospital appointments, his mother Natalie was forced to give up work to care for her son.

In December 2012, the family’s life began to crumble, when Louie was diagnosed with SMARD, a muscular disease that was passed on genetically to children by their parents after being admitted to Intensive Care when he stopped breathing.

SMARD affects a child’s development and the severity depends on what ‘type’ the child has. Louie was diagnosed with Type 1, preventing him from holding his head up, rolling over, crawling, sitting without support or walking. The condition affects all muscles, leaving legs, upper arms and neck extremely weak, even preventing sucking, swallowing, digesting food and excretion. Constipation is a common problem as well as being able to control excessive drooling, getting proper nutrition and calories from weight gain. A common cold can easily turn into pneumonia, which can leave children vulnerable and susceptible to respiratory failure when the lungs or chest muscles are unable to breathe on their own.

Two major decisions needed to be made….whether to insert a feeding tube to prevent pneumonia and starvation or whether to put Louie on a ventilator when experiencing respiratory failure. The average lifespan of a child with SMARD is only eight months old, with many only living to two years old.

Since his diagnosis, this amazing little boy requires around the clock nursing care from his parents. He can’t walk or sit up, has severe hypertonia affecting his whole body and is not able to life his own head. He has a tracheostomy and is attached to a ventilator and saturations monitor 24/7. He is PEG fed, requires regular suctioning and nebulisers throughout the day and night, along with catheter care and intense physiotherapy.

Natalie applied to Charlie Cookson Foundation for help after seeing how the Foundation had supported Paige Tait through Facebook. Natalie was amazed and relieved to see the support we provide.

Natalie commented: “Where do I start, I really don’t know what to say. We would like to thank CCF for supporting us and to everyone that has donated. This is going to be a huge weight off our shoulders and it is such a relief, we don’t have to worry for the next few months, we can finally get back on our feet. Thank you so much to all of you.”