Princess Chloe September 3rd, 2006 - December 18th, 2011
Princess Chloe came into the world on 9/03/06, full-term and weighing 6lbs 14oz & 18-1/2 inches long. There were no indications of anything being wrong with her until we noticed she wasn't meeting some of her milestones such as holding her head up or rolling over.
We were referred to a Neurologist who confirmed the diagnosis of SMA type 1 with a genetic test. 1 in 40 people carry the gene that can cause SMA but both parents must be carriers (99% of the time) to have a 1 in 4 chance of having a child with SMA. 1 child out of every 6,000 - 10,000 children born (around the world) are born with it. There are several types; Type 1 being the most extreme.
Spinal Muscular Atrophy is not curable or treatable. It affects the voluntary and involuntary muscles in her body (in layman's terms) her muscles shrink and die and she will get weaker and weaker with time- and will never improve. She cannot swallow (aspirates everything including saliva), cough, eat, move, talk, play or breath on her own.
SMA DID NOT AFFECT HER COGNITIVE ABILITIES. Most Neurologists have confirmed SMA children are actually SMARTER than average- which makes it 'fun' to keep these angels entertained!!! ;)
She was on a ventilator 24/7 (complete respiratory failure since she was 7mos old), ate through a G-tube, had breathing treatments every 4-6 hours with a cough-assist machine, albuterol treatments, suction machine, ( where I had to suction all the saliva that she is aspirating constantly throughout the day).
We changed her position throughout the day and night since she could not move (at all on her own) to keep her from getting sore. She had O.T., P.T., Speech Therapy, Playgroups amongst other regular follow ups .
MOST Important facts are SHE LOVED to be read to, watch Cartoons, go for runs with me pushing her in her wheelchair, be held, loved to interact with her eyes (she was a professional eye-roller), bath-time and swimming and LOVED being LOVED!!!! Just like any other 5 year old girl.
We loved her very much and were determined to do all we could to keep her here and happy. She was a quiet, sweet-tempered angel who has changed our lives- to the extra-mile and she taught us what LOVE is!
All was well with Chloe until one day, December 18th, 2011 after her tubby time, she closed her eyes and went to sleep forever. Forever a 5 year old Angel.
We miss her dearly and hope a cure comes soon so that other parents won't have to endure this pain.
Thank you for reading Chloe's story and maybe you will tell someone about SMA type 1 and if more people are aware then maybe one day there will be a treatment or a cure!