Athena Reitano

This is the story of Athena Noelle Reitano and our family's journey dealing with the unthinkable....possibly losing our baby girl to the devastating disease called "metachromatic leukodystrophy".
It all started when Athena was 18 months old. Up until then, we were a typical family of four. My husband, Sal, & I, and our two beautiful girls, Raven and Athena. We lead an average life, nothing out of the ordinary. Athena was a preemie, so she was slightly delayed with her motor skills, but she was catching up quickly. But at 18 months old, she wasn't standing on her own & we were getting worried. She could "cruise" along, holding onto furniture though, so we figured she would be walking soon. We went to see an orthopedic specialist & he sent us home saying she was fine. We noticed that her foot was turning out alot, but nobody seemed concerned about that either. Her doctor set us up with "early intervention" & Athena started seeing an occupational therapist. He showed me various exercises to help her with balance and to strenghthen her trunk muscles. We saw slight improvement every once in awhile, but for the most part she stayed the same. We were told that a basic rule to follow is, "if they sit up by themselves by 18 months old, they will walk by 3 years old." We felt good about that.
Then, on Athena's second birthday, everything started going wrong. We started noticing her holding her head bent to the side. Then she got to the point that when she crawled, she would drag her head on the ground. She became less & less mobile & wanted to be held all of the time. Then, when we sat her up, she would just fall over. We made an appointment to see a neurologist, & by the time we saw her, Athena had already gotten alot worse. We told her all of Athena's symptoms and her history, and she examined her. We thought that worse case scenerio was that she had mild cerebal palsy. We were told that it was much worse. She said that Athena would never walk and quality of life was not looking good. I asked her about life span & she said, "it wouldn't be weeks".

next page





	Athena Reitano This is the story of Athena Noelle Reitano and our family's journey dealing with the unthinkable....possibly losing our baby girl to the devastating disease called "metachromatic leukodystrophy". It all started when Athena was 18 months old. Up until then, we were a typical family of four. My husband, Sal, & I, and our two beautiful girls, Raven and Athena. We lead an average life, nothing out of the ordinary. Athena was a preemie, so she was slightly delayed with her motor skills, but she was catching up quickly. But at 18 months old, she wasn't standing on her own & we were getting worried. She could "cruise" along, holding onto furniture though, so we figured she would be walking soon. We went to see an orthopedic specialist & he sent us home saying she was fine. We noticed that her foot was turning out alot, but nobody seemed concerned about that either. Her doctor set us up with "early intervention" & Athena started seeing an occupational therapist. He showed me various exercises to help her with balance and to strenghthen her trunk muscles. We saw slight improvement every once in awhile, but for the most part she stayed the same. We were told that a basic rule to follow is, "if they sit up by themselves by 18 months old, they will walk by 3 years old." We felt good about that. Then, on Athena's second birthday, everything started going wrong. We started noticing her holding her head bent to the side. Then she got to the point that when she crawled, she would drag her head on the ground. She became less & less mobile & wanted to be held all of the time. Then, when we sat her up, she would just fall over. We made an appointment to see a neurologist, & by the time we saw her, Athena had already gotten alot worse. We told her all of Athena's symptoms and her history, and she examined her. We thought that worse case scenerio was that she had mild cerebal palsy. We were told that it was much worse. She said that Athena would never walk and quality of life was not looking good. I asked her about life span & she said, "it wouldn't be weeks". next page