It’s not a pretty sight to behold. It hurts to see something go bad and you can’t do nothing about it. The joy of a parent is to hear your child call your name, something that a parent is longing but will never hear since their 5 year old kid is suffering from dementia.
Mr. And Mrs. Mills were shocked to learn that their daughter, Penny is suffering from Sanfilippo Syndrome and is unlikely to live life past her teenage years.
Andrew and Kelly, parents of Penny, said Penny’s speech has reduced to a point where she’s unable talk much like she used to, she can’t do simple things she used to do on her own anymore example, using cutlery set, using the bathroom, toilet, wearing her footwear etc. Mrs. Mills said:
She (Penny)used to say mummy, but I can’t remember the last time I heard her say it.She still lights up when she sees us, so we don’t think she has forgotten us yet, but we are prepared for that to happen. It’s one of our worst fears.
It’s like we are grieving for our little girl, as we watch this cruel disease rob her of everything she knows.’
It’s quite disturbing to see a child go through life under this circumstance. To be seen wasting away by a dreadful disease such as this. What makes it worse is that very soon, she’ll not be able to swallow food and must be fed through tube because sanfilippo causes inability to swallow as the victim grows.
The family has promised to make the rest of her life joyful and memorable before she dies.