Autumn’s Story

In Loving Memory of Autumn – A Happy Baby through all of the trials

Autumn was born on 11/28/2002 and passed away on 2/18/2004. Autumn had a very difficult life, but like so many other children with GM1, she was happy and strong through it all. The following is what her family has described about her short life.

“Our sweet daughter Autumn was born on Thanksgiving day. She was three weeks early, but still a healthy 7lb11oz, 19 inch long baby. When she was delivered, they put her on oxygen for a little bit (cord was around her neck) and it was clear she had bilateral club foot which never showed up on the ultrasounds. The Doctor did ask about the placenta and said he was sending it off for testing. We didn’t think anything of it.

In January 2003, we were having casts/surgery done on her feet. During this time, a CAT scan was done which showed hydrocephalus. We were at the hospital to have the shunt put in when it was discovered she had a heart condition, dilated cardiomyopathy. She was placed on oxygen, which incidentally, she never came off of. She was put on all kinds of medications for the different symptoms and conditions.
Over the next several months, Autumn began to be constipated and her stomach became extended and hard. I fought with her pediatrician about the problem, but he didn’t want anything to do with it since Autumn was already dealing with so many problems. I was eventually able to get a Doctor to do an ultrasound of the fluid.

She had surgery in October, with the thought that her body wasn’t absorbing the fluid from the shunt. The Doctor drained 48 ounces of fluid from her abdomen. The next day the fluid was back, with the shunt draining into a bag, so now what?! Many different tests (blood, muscle bodies, skin biopsies, etc) and we finally got a diagnosis on her first birthday – GM1 Gangliosidosis. We were told it was the 51st case, no treatment, no cure, and she won’t live past the age of 2. We thought. ‘What in the world are you telling us?!?’

Not much changed after the diagnosis, except that soon after, she had a feeding tube put in. She had a total of 14 surgeries and had to have about a dozen meds around the clock. February 18, 2004 was her last day with us. It was a day of multiple bad seizures. We felt that was the most torturous day for everyone. She looked like she was hurting so badly.

During her life, she never sat, held her head up, or rolled over. She was a very happy baby for having to go through all of this. We knew if she cried, there was definitely something wrong.
After she passed, talking about her and the disease helped us ‘move on’.”

Autumn’s Story

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