Charlie’s Story
 

Charles Thomas Smith was born on the 19th of May, 2015. Charlie was a happy, healthy baby boy who rounded off the Smith family nicely! All Charlie’s prenatal scans did not show anything out of the normal and a maternal health nurse check-up the week prior to Charlie’s diagnosis showed Kate and Brad had a strong, interactive, healthy little boy. Life was extremely busy, what with three children under 5. Poppy and Evie (Charlie’s big sisters) were about to embark on school and preschool.

Just prior to Charlie reaching five months of age, Kate and Brad noticed some small changes in their little boy. Kate and Brad put it down to the fact that they had been travelling the past 2 weekends and presumed Charlie’s unusual ‘pulling up’ / tightening movements were due to constipation and being in his capsule more than usual. On Tuesday 13th October, 2015 Kate returned home from preschool drop-off when Brad called, asking how Charlie was doing. Kate remarked that she thought it sounded silly but she believed Charlie looked ‘vacant’ and like someone who was about to have a seizure. With that, Charlie had a large grand-mal seizure right before Kate’s eyes. 

Following an ambulance trip and an extremely intense day which saw Charlie have a lumbar puncture and endless tests and blood tests, Charlie was admitted to Albury Paediatric Ward overnight. The seizures were relentless; poor Charlie wasn’t able to get any relief and his little body wasn’t responding to the medications. Fortunately, the pediatrician came past just as Charlie was having an ‘infantile spasm’. This was the game-changer; within 45 minutes, Charlie and Kate were on a plane bound for Melbourne’s RCH where he would undergo more tests, an EEG and an MRI to see what was happening in Charlie’s brain and what was triggering the seizures.

On Thursday 15th October, the Smiths lives changed forever with Charlie being diagnosed with a rare brain malformation known as ‘Lissencephaly’ (smooth brain). Part of this condition meant Charlie would be subjected to daily seizures (intractable epilepsy) and would suffer from respiratory conditions. Kate and Brad were told ‘worst case’ (but realistic) scenarios; their beautiful little boy would most likely never walk, talk, feed or toilet himself. Heartbreakingly, they would only have their little boy for an unknown period but likely only ‘his childhood life’.

Charlie is now 5 ½ years old and continues to have daily seizures which Kate and Brad try and manage through medications. Charlie inspires us with the strength he shows us each day, fighting seizures and the multiple health issues he suffers. Charlie is so blessed to be surrounded by so much love and has 2 wonderful big sisters, Poppy (10) and Evie (8), who dote on him and smother him with hugs and kisses. He is a placid, handsome little (actually extremely tall!) man with sparkly blue eyes and a smile that melts hearts…hence being given the nickname of ‘Rooster’ (he is a good-looking Rooster, after all!) This little boy knows nothing but love and brings so much joy to everyone who meets him.

As you can imagine, transferring Charlie in and out of the car is becoming increasingly difficult. Brad and Kate are looking to purchase a wheelchair accessible car which will be adapted to suit Charlie’s wheelchair, meaning outings will be much easier and less taxing on Kate and Brad with regards to lifting, not to mention more comfortable for Charlie. The NDIS will fund the modifications to the car however we will need to purchase the car ourselves.

If you are in a position to help in any way, big or small, you would not find a more appreciative family!

Thanks to all for your ongoing love and support –

Kate, Brad, Poppy, Evie and Charlie xx